Obscur science

I browsed a popular science magazine many years ago while I was waiting for my turn at a dentist’s office. The article I read was about tomato sauce, specifcally why it could so hot on a pizza. I can’t remember what they proposed to do about the problem, but I what stuck in my mind was that this didn’t seem like a very relevant problem.

Over the years I have read about many studies that I think was a waste of money. There are many studies saying that if children spend hours in front of the TV, computer, different game consoles, they have less time to do homework. Isn’t that pretty obvious? Two researchers at Wayne State University and Auburn University wanted to find out whether there was a link between country music and suicides in urban areas. They concluded, not surprisingly, that the themes country music tend to focus on could affect people that are already at risk. I am not sure that blues or metal bands like Metallica are very uplifting either, so why spend money on this research? The University of Mexico wanted to find out whether strippers received more tips when they were ovulating, and apparantly they did. Another study concluded that rats prefer silence from music, but Beethoven is better than Miles Davis. Why is that relevant?

An interesting article on The National Library of Medicine debate 30 years of research on treatment of tardive dyskinesia. This is a side effect, in the form of involuntary movements in the face and mouth, which can occur after taking medicines for schizophrenia and other serious mental disorders. They found 500 studies and 90 suggested therapies, but 30 years of research had not produced anything useful. That wasn’t because there was no solution to the problem, but because the research was bad. The studies were too small or the treatment was terminated too quickly. The same research group went through 2 000 studies on schizophrenia with the same result. The craftmanship can only be described as crappy.

We may smile when we hear about the studies I mentioned in this post, but this is serious. There is a lot of money invested in research we don’t need, while better studies don’t get funding. Do you remember the Ice Buckett Challenge? That was commendable, but it shouldn’t have been necessary to beg for money.

Science lies

I have neglected this blog for two months because I wasn’t getting any traffic anyway, but I have decided to give it another go. I have some mixed emotions about this post even before I start writing. That’s because I like science, but it is irritating to observe how flawed it is.

I don’t like cheating, but we are not doing anyone any favours by neglecting to discuss meta science. I quoted an article from National Geographic a while back. The headline was a question I think many of a different kind of skeptics have asked themlselves: Why do many reasonable people doubt science?
There are many answers and one of them could simply be that too many people have relied too much on science as the truth, the whole truth and nothing but the truth. According to this view there are no hasty conclusions, corruption and publication bias in science. That’s precidely why we have science, to avoid that.

A study from 2005 claimed that most studies get ot wrong. Another study aimed to prove John Ioannidi wrong, but if I understand the criticism correctly it is invalid. The study Most published research findings are false – But a little replication goes a long way. The researchers behind that study claimed that if another study confirmed the findings, the likelihood of the results being correct were high. That’s an important principle in science, but this is where the problem lies. A study tried to replicate 100 studies in psychoogy, but could only confirm 47 of them. Read about it in Science. An article from BBC report on a similar problem in cancer research. The reproducibility from the University of Virginia tried to reproduce the reults from five major cancer studies, but they could only confirm the findings in two of them. The result in two of the studies were inadequate, while they didn’t get any of the same results in the fith study. Read more on BBC.

This doesn’t mean that science deliberately lies, but that happens too. We need science because we wouldn’t get anywhere without it, but it’s not a substitution for religion. Science is not infallible, and in addition to the flawed people conducting it, science is speculation and hypotheses. It’s important to ask questions, but too many research things they don’t know anything about. The result isn’t to cut out all research, but cut out a lot. Competition is important, but the focus shouldn’t be exclusively profit.

Why most published research findings are false

Do you want to write about it?

It’s useful to be able to translate known words and phrases without having to memorize something new, but a few are always tricky. That can lead to some rather amusing misunderstandings, and I frequently detect bad translations when I look at subtitles on TV.

I talked a lot as a child, and the fact that I stopped doing it is the main reason I am not an aspie. The psychologist at the hospital that tested me admitted that I had many of the Asberger traits, but as I didn’t talk to “God and every man” about my special interests I could not have Asberger syndrom. I call that checklist diagnosing, but I didn’t argue with him. I think it’s a shame because having the unofficial and much less recognized diagnose NLD isn’t always a lot of help. I don’t collect diagnoses, so it doesn’t really bother me, but it leaves me somewhere in between. I am officially Asberger’s unknown cousin NLD, but unofficially I feel that the relationship is closer.

But I digress. My point was the expression “talk like a waterfall.” I am not sure that works in English, but that’s one of the Norwegian expression for a very talkative person. It gives me all sorts of associations, some rather disagreeable, so I assume it wouldn’t be correct English. Now I finally arrive at my point. I’m a writer, not a talker these days. Perhaps I write like a waterfall? The words are flowing with a lot of force and they leave you …eh wet, cold and uncomfortable? Hm… That’s not exactly the image I was looking for. What about electrified? Maybe too bold.

I love writing, which is why I continue writing posts that no one reads. This blog is sort of the family holiday photos that you think your friends will be interested in, but why would they when they could never feel the way you did when you experienced it? Writing is still fun. Something strange happens when I write. I think when I write and that’s how I develop ideas. Just sitting down to think is less effective. It’s not a strategy I recomend because it was a bloody nuisance (another expressions with interesting images) in college. Professors wanted me to write a disposition (thesis outline) before I started writing the paper, but I sort of developed that along the way. That’s a much more interesting way of working, but not exactly less time consuming, and that is the problem in any job. You don’t have much time.

There were lots of things I didn’t know or understand about me. I didn’t have the disposition I needed to write accurately from the beginning. That came later, but I should have been better at deciding what was appropriate to publish. Writing is good, but there are things you shouldn’t publish. Many people don’t know anything about depression and anxiety for example. We have a word in Norwegian that doesn’t sound that bad, but it is more serious when it’s translated into English. Vemod is often translated with mournful or sadness, and it can be that too, but I like nostalgia better. It’s a feeling you get when thinking back on a good memory and you know it will never come back. That’s sad, but not I have no reason to live-kind of sad.

So when I expressed this kind of sadness and tried to uncover things I knew influenced my thoughts, some people assumed I was depressed. They revealed a further lack of understanding when they assumed that a sad man couldn’t be a good father. There are sufficient studies to prove that mentally ill parents don’t transfer these symptoms to their children. Instability is bad for children. They want the same stable life their friends have, and it doesn’t matter what causes the instability. Healthy parents that argue all the time are more likely to do harm. This is important to remember as half the population in my country get a mental disorder one time during their lives.

The thoughts and memories I tried to untangle were invisible to me, and I think of them as dark matter. Not beause they are especially dark in nature, but because there are invisible or unknown things that can explain thoughts and behaviour. Most of the universe is made up of dark matter. It can’t be seen, but scientists know there is something there because it influences the parts of the universe they can observe. So when someone gets sad or angry, and you don’t understand what caused it, there could be something you are not seeing. Many people have dark matter, which means it doesn’t last long enough to qualify as depression, but it could still explain a lot of things.

Stuffed pokemons on my keyboard. I like complete silence when I write, but these dead quirky creatures are welcome company.
I like complete silence when I write, but these dead quirky creatures are welcome company.

Writing has been good therapy, but it has been and is my voice as well. I have many excellent conversations planned inside my head, but I can never get them out. I am not eloquent. I am not one of the very few with the genius gene. I don’t impress or interest most people, and there usually isn’t enough time as I am not a very fast talker. I think a lot and while I am busy thinking the conversation moves on.

I have a tendency to think about something that amuses me. I am constantly reminded of lines from Sherlock Holmes, Star Wars, Star Trek, Harry Potter and The Lord of the Rings. I also think about contradictions like the fact that vegetarians can’t wear wool or take most vitamins/medicine because they are made with animal gelatin. Not that I am enjoying their predicament, but if you intend to prevent all living beings from suffering, you are going to have a very restricted life. I am not sure it’s possible. I have have learned not to point that out, however.

Many people have a contradictory behaviour and maybe quiet people have one too. I bet that if you could tap into most quiet people’s thoughts there wouldn’t be silence at all. There’s been a lot of focus on introverts in recent years, especially after Susan Cain published her book Quiet: The Power of Introverts in a World that Can’t Stop Talking. Quiet doesn’t mean quiet. It is true that I am content when I am alone, but it wasn’t always like that. There was a time when I wished I could be like other people, but they tend to be annoying. I have a feeling that friendship doesn’t mean quite the same to me as it does to other people. I am content being in the same room, but less concerned about an emotional connection. Emotions in general is a rather tricky business.

I wrote about why I write on my Norwegian blog several years ago. I believe that was one of my first posts, but I am not sure I did an English version. I was reminded of this when I read Anonymously Autistic’s I want to encourage everyone to write. She has some interesting hashtags, like #SheCan’tBeAutistic. That’s sort of like “but she looks so normal”, which is common theme with invisible diagnoses. How could I possibly have any challenges when I look like I am suposed to? And people wonder why I don’t find them fascinating!

I had better stop before I digress again because I feel a need to do that when I read Anna’s profile, who is not Anna, but calls herself Anonymously Autistic. She’s in the autistic closet. How is this closet? I hope it’s a walk in closet because it sounds awfully uncomfortable to stay inside a small, dark space from IKEA. That’s those silly ideas I get when I talk to people. Sidetracks tend to be the main track in my mind. What can I say? I am not a one track kind of mind. My road map is busy.

Mental illness hysteria

The dandelion is one of my favourite symbils. It is a survivor and as soon as you stop spraying herbicides, these magical flowers will come back in vast numbers.
The dandelion is one of my favourite symbols. As soon as you stop spraying herbicides, these magical flowers will come back in vast numbers. Some don’t want them around, so they kill them with chemicals (or medicine)

I will occassionally write posts that are not directly relevant on a blog about NLD and ASD. The topics are still interesting because we should aim to make our field of vision as wide as possible. Many want to analyse Donald Trump and the diagnosis is usually narcissistic personality disorder. I don’t agree with that assessnent, but there is another interesting question too: Why is it so important for us to hand out diagnoses based on what we see on TV?

The word narcissism is one of those that have lost its meaning. I have a feeling many use it as a synonym for vanity these days. If you have a personality disorder it means that you differ sigificantly from an average person in terms of how you think, feel, perceive or relate to others. I’m not that enthusiastic about the general term personality disorders because I have a feeling that people have fixed ideas about what it is, and many wrongly assume that a diagnosis means you are dangerous. If you have never heard about schizoid personality disorder you may think it has something to do with schizophrenia, and the Merriam Webster Dictionary supports that notion. It says that the word schizoid is suggestive of schizophrenia, but the diagnose describes a person that is apathetic, indifferent, solitary etc. This is a person that neither wants or needs a relationship.

An avoidant personality disorder describes a person that is self-conscious, anxious, and tense in social situations due to fear of rejection. That doesn’t sound like a dangerous person to me. Some feel that a narcissistic personality disorder is, though. The Mayo Clinic defines this as a mental disorder “in which people have an inflated sense of their own importance, a deep need for admiration, and a lack of empathy for others.” It may seem like all politicians have some of these traits, but when I look at Trump on the news I wonder how his need for admiration is expressed. There are a lot of people he doesn’t like, and he doesn’t exactly pretend that he does. It seems to me that narcissists are very predictable, but it’s not very obvious to me that Donald Trump is.

Trump frequently does the unexpected. He has a habit of doing exactly the thing that will make him unpopular, which is why many accuse him of being dangerous and mentally ill. The problem with DSM 5 and ICD 10 is that they describe stereotypical behaviour. These manuals don’t like the unexpected, which is very relevant to ASD and NLD as well.

Autism spectrum disorder is described in ICD 10 under F 80-89 Disorders of psychologcal development, while NLD is not an official diagnose yet. It is still included indirectly because it shares symptoms with Develomental Right Hemisphere Syndrome, Developmental Coordination Disorder, Social-Emotional Processing Disorder, Asberger syndrom, and Gerstmann syndrom. I have never understood why it is regarded as a mental disorder.

I will get more into the research in a later post, and there are people on both sides. Some argue that autism is neurologically based, while others insist that we should embrace the mental illness label, and thus remove some of the shameful element. I am not sure how to feel about it right now, but I don’t like this tendency to label everything that varies from the norm as mental illness. Mental illness can be treated with medicines and neurodevelopmental disorders like autism and ADHD can’t. They require therapy that will cost money and effort. Incidentally, when I was working as a teacher I had a few pupils with ADHD and all of them received Ritalin as the only treatment. There is no doubt that drugs can change behaviour, but that alone is not enough.

Besides, ADHD share many symptoms with NLD, ASD, food allergies, seizures (such as epilepsy), sensory disorders and sleep disorders. If medicine don’t work it could be because the child was misdiagnosed. Themes like independence and being allowed to be different are important to many of us. That could be seen as a violation of the norm. Does it make you mentally ill if you want to live an independent life, preferably off the grid? In my opinion that would prove your sanity, but that doesn’t mean I intend to homestead in Alaska.

NLD and special olympics

girls playing football
My daughter played football for a short period, but decided ballet was much better.

I think I have mentioned before that I used to be a member of several NLD groups on Facebook. I left several because so much didn’t feel relevant to me. I guess it does to most of the people that are active there. It could be a theory of mind kind of thing, but I was quite surprised when someone asked whether any of the other members participated in special olympics.

I don’t understand why they put it that way, but according to specialolympics.org it’s an organization for athletes with intellectual disability. That’s clearly inaccurate because athletes with a physical disability can compete as well. My point is that either you look at intellectual or physical disability it doesn’t seem fair if they have to compete against someone with NLD. Team sport could be a challenge for us, but most events are individual. I recognize that some of us have severe challenges, which could make sports another arena where we constantly fail, but sports is still beneficial.

I would argue that most of us can and should compete against people with no disability. The n in NLD stands for disorder or disability, but I have a feeling that many exaggerate. Literature seems to be focused on children and what they can’t do. So when people hear about NLD in grown ups and read an article or a book, they could be left with a rather negative impression. NLD-kids can struggle with visual and spatial awareness, which can make them physically awkward. Problems related to communication and executive functions could also be relevant in sports, but I don’t see how we would separate athletes based on test results. Some respond very well to intervention if it starts in early childhood, so they could function much better than the previous test scores would indicate. Personally, I have always struggled in school. Handwriting, reading and mathematics were especially problematic, but my IQ is relatively high. There are many things I have struggled with in jobs as well, but less in sports. I loved playing football (soccer to Americans) and running as a teenager and young man, but there was no need to treat me as disabled in these activities.

Children should do sports even if they find it hard. It’s a matter of finding the right one. My daughter loves ballet and horse back riding, and these sports are actually medicine to her.

The Asberger conspiracy

I mentioned in a previuos post that I would look into the allegations that Hans Asberger had been a Nazi sympathizer. I found some shocking accusations, but I also discovered that it wasn’t at all as simple as the accusers claimed.

The first document I read was a question someone had asked on Quora. The question was how autistic people had been treated in Nazi Germany. Most of the answers addressed the question, but an answer from 21st December 2016 focused on Hans Asberger. Maria referred to the article The Doctor and the Nazis, and the book In a Different Key as evidence. I haven’t read the book, but the same authors wrote the article I referred to, adapted from the book. Both the authors and Maria seem to conclude that this book provides irrefutable evidence that Hans Asberger was a Nazi. There must be something I am not seeing or understanding, because it’s not that apparent to me. My first reaction was that Maria was awfully sure of herself, but after doing some research it turned out there were more nuances to this story.

The question about a possible Nazi past came up in 1993 when the people working on the Statistical Manual of Mental Disorders (DSM) had to decide whether or not to honour Asberger by giving the new diagnose his name. A group of experts led by Fred Volkmar at Yale Child Study Center went through the evidence and debated for a long time. This seems to have been a thorough investigation, sadly more thorough than many real Nazis had to go through.

Erik Schopler was a psychologist based at the University of North Carolina, and director of TEACCH. He was a strong opponent and didn’t think Asberger had contributed to our understanding of autism. According to the article in Tablet, Schopler’s criticism of Asberger in the 1990’s was noticeably personal. He even used the publications he oversaw, Journal of Autism and Developmental Disorders, to drop illusive remarks about Asberger’s alleged Nazi past.

The authors of this book and article may have had a fair amount of emotions invested in their conclusion as well. This is from the article where they write about Eric Schopler:

Instead of evidence, he had instinct, which perhaps came from being a Jew who had lived part of his life in Germany. Perhaps this instinctive suspicion also explains the nearly complete silence concerning Asberger on the part of one of his most famous contemporaries- Johns Hopkins child psychiatrist Leo Kanner.

I am not surprised that he was silent because they were competitors, and as far as I know Hans Asberger, unlike Leo Kanner, didn’t support the refrigerator mother theory. On the contrary, he seems to have had a more positive view. I recommend that you read the articles I have linked to after this post, the entire posts. They offer more information, and feel free to correct me if I have misunderstood this strong evidence. 

I don’t feel that I have to make Hans Asberger to be a good man, but from what I have been able to find out he probably wasn’t worse than the rest. Allow me speculate for a while. Austria liked the portray themselves as victims after the war, but I don’t think there is any doubt that the Austrians for the most part welcomed the Nazi regime. Many of Asberger’s colleagues would have become members of the Nazi party, while Jews were arrested if they didn’t leave the country in time. Austria had just passed eugenics laws that targeted impaired children. Do you think there is a possibility that Asberger emphasized the most promising children when he talked to the authorities? I haven’t read his research myself, but those that have see a man that cared about the children he studied. In other words, it sounds like he may have done what he had to to be left alone.

I also think about the bigger picture. The eugenics laws were not that controversial at the time. My own country, Norway passed a law in 1934 that allowed hospitals to sterilize mentally ill, mentally handicapped and travellers, and this law was applicable for 40 years. The eugenics movement had considerable support in Europe and the USA before the war. Lobotomy was also an accepted treatment in mental hospitals, but apart from the cruelty and the fact that it wasn’t necessary, no one talked about the high mortality rate (18 of the first 35 patients in Norway died on the operating table).

I also think about the many true Nazi scientists that helped the USA after the war. Werner von Braun, Hitler’s rocket scientist, was one of hundreds of German scientists, engineers and technicians that developed the Apollo program. The USA and Britain were in charge of the denazification of Germany, but it was very arbitrary. They made the decision to narrow the field down and members of the Nazi Party that had been born after 1919 were  exempted on the grounds that they had been brainwashed. An incredible 90 percent of the cases were also judged to be in a less serious category, and they even accepted statements from other people. That led to neighbours giving each other alibies, and suddenly Germany had become a country of victims that had opposed Hitler.

I am also reminded of Oskar Schindler, who unlike Asbeger, was a member of the Nazi Party. He was also a spy collecting information for the Nazis, and he later profited from the war. He is remembered for what he did later when he saved some Jews. It still puzzles me that we don’t forgive, or even accept Asberger’s work, because he may have done and said something that some people find uncomfortable. I can’t help wondering whether we are being completely fair. Why is it so important to discredit Hans Asberger? Why was everybody willing to leave Asberger alone until Lorna Wing and Uta Frith pulled him out of obscurity? I would have to accept the evidence if it was overwhelming, but I am still not convinced it is.

One final thought. I want the best people to research autism. I don’t need teddy bears that will give me a warm and fuzzy feelings inside. While I was doing research for this post I came across a post in Psychology Today. In Was the Father of Asberger an accomplice to Murder John Elder Robsion writes about how he was struck by Asberger’s insight when he was reading Asberger’s papers, but he also noticed the tone of writing, which he thought was cold, hard and unsympathetic. That’s a conclusion I assume he came to after being told that Asberger had a Nazi past. That kind of knowledge changes everything. It could simply be that Asberger had the classic autism features himself, which he certainly had in childhood.

It would be bad if these accusations against Asberger were true, but what do you think would happen if we rejected all unethical research? Big pharma for one still hasn’t figured out how to do ethical research, and if you google unethical studies you get some pretty awful modern examples, and then there is the military. Do you really think we are just doing wonderful things? Maybe we need to decide who we wish to believe, and let that be the path we choose in the future. I think that’s what the author of Neurotribes: The Leacy of Autism and How to Think Smarter about People who Think Differently did. Steve Silberman has chosen to give Asberger the benefit of the doubt. According to Silberman Asberger emphasized the test subjects’ talents, not their defects. If that is true he clearly saw something in these children the Nazis didn’t.

I mentioned heroes in My unique line. I believe I can put Hans Asberger down as a hero. Maybe not a perfect one, but I think he did us a favour. To some people there may always be some lingering doubt, but are we really applying the same standard to ourselves?

The Docto rand the Nazis
Was Doctor Asberger a Nazi?
Did Hans Asberger save children from the Nazis-or sell them out?

My unique line

From man became man until today we have created a line
Out of a longing to understand.
Anne Grete Preus from the song Magic Motel

I’m afraid I can’t do justice to a singer I think is one of our best songwriters as well, but I hope you get the essence as it important to this post. I am sort of continuing a post I recently published on my main blog, Autistic cyborgs. It’s about the future, a future that many believe will be dominated by machines, both simple ones and AI that will look like us.

I like science fiction, and one of the most fascinating encounters occur when aliens don’t understand our linear thinking. It doesn’t make any sense for them to talk about past, present and future. They see everything as the same existence where they can jump back and forth as they please. This has been used many times in science fiction, and as I am currently watching all the seven seasons of Deep Space Nine again, that’s the example I am thinking about right now. Commanding Officer, Benjamin Sisko, encountered a race that didn’t understand linear thinking. They were pure energy, and as death didn’t exist to them, they didn’t understand our fears. Sisko was seemingly unconscious and everything happened inside his mind, but it was still real. This life form used different people from his memory to communicate with him, such as his wife who had died several years earlier when their spaceship had been attacked, and their son. The aliens couldn’t understand linear time because it appeared to them that Sisko was present on Deep Space Nine and on the spaceship at the same time. Sisko had just explained linear time, but if he existed in both time periods at the same time, time couldn’t be linear.

Sisko’s wife was with him all the time. He was still in the cabin at the moment when she was dying. He hadn’t thought about this as present time, but had to admit that he was still where he had been a couple of years earlier. He had not been able to move on, and when the aliens asked him why he chose to exist on the spaceship if he hated it as much as he did, he realized that they were right. He did exist in both times simultaneously. I guess it’s very human to struggle with a linear time. That moment is gone, but we frequently don’t want it to be.

Illustration pencils and erasers. I sometimes wish I could magically erase and re-write my line, but I like what I have.
I sometimes wish I could magically erase and re-write my line, but I like what I have. It’s unique.

I think quite a lot about the low-rise where I spent most of my childhood. I had a lot of trouble in school, but apart from that these were quite good years. We moved as I entered my teens and everything changed. I think about the opportunities I had, or thought I had when I finished high school in 1987. I wonder why it was so hard to get a job and to keep it. I wonder why I had problems fitting in and why I always had a feeling I was an alien in this world. In short, I wonder why I became the person I am today. Let’s just say that I am quite different compared to anyone in my family.

I can’t go back and correct things, but have to live with the linear condition that everything we do affects the future. It’s like a game of soccer or baseball where every action determine what will happen next. There could be dozens of scenarios for every little move, and the other players have to predict what is going to happen, but it is impossible to succeed every time. That’s what makes these enigmatic sports fascinating to many people.

I have thought a great deal about the choices I made, but thinking back it doesn’t feel like I had a lot of choices. I have tried a lot of different jobs, and I sometimes wonder if I had been more successful with a different career choice. Maybe I would have made that other choice if it had been possible, but I have always opened the only open door I could find. I did the best I could.

I studied for 5,5 years in college, but didn’t get much of a career as a teacher. I don’t regret that long fight for an education, and it really was a struggle. Studying is never a waste. It helps us to function in society (it could protect us against being exploited for example), and as I had to manage without any help for a long time that was useful, but it also allows us to better see the lines other people have created in the past.

There have been many heroes through history. Some of mine are John Bunyan, C.S. Lewis, Martin Luther King, Isaac Newton, Albert Einstein, Carl Sagan, Thor Heyerdahl, David Attenborough, a few science fiction authors that have gone beyond entertainment, and Jesus of course, just to mention a few. The question is whether I should include Hans Asberger as well. I am going to explore that in my next post.