Betrayed by our own

I never start the year with a list of the most popular posts or topics from the previous year, but if I did the top three every year would probably be about autism and life expectancy, challenges for adult NLDers and how to deal with them, and neurodiversity.

The latter should be more controversial than it appears to be, because in reality it means that you ask for diagnoses like ADHD and ASD to be removed from DSM and ICD, and for the work to get NLD included to be stopped. Neurodiversity states that these challenges are nothing more than the variation you expect within the normal range of human DNA, so there’s no need to offer services to these groups. I find that to be a cold attitude promoted by people that didn’t need/get support.

There are many high-functioning with success, but there are also high-functioning that don’t succeed unless they receive support from an early age. I have encountered a few of them myself in different job-training and rehabilitation programmes. Some may think that all you need is a sufficiently high IQ score, but that isn’t an accurate tool to determine who will succeed. There are many pupils and students that do well in school with a below average score, and there are many far above average that are not very intelligent in other areas. They may be a brilliant politician, businessman, or scientist, but not always the greatest people.

I wrote a few posts after the #metoo madness, and I focused on the diagnoses I cover on this blog. There is research suggesting that aspies are far more likely to be abused than the general population. This could be because sex education in school isn’t good enough (if you struggle socially you are less likely to talk about sex with friends), because you can be manipulated, or because you want to avoid conflicts. So both boys and girls need to learn how to appropriately express these strong romantic feelings, which is a challenge as feelings in general are hard, and girls need to learn that they are not obligated to have sex every time their partner wants (or even orders it). I’m not impressed with #metoo as I didn’t think the campaign sent the right message, but one of the positive side effects was that it may have made girls on the spectrum aware of a few things.

I mention this as examples of consequences of not offering any kind of help to people with challenges. I like the positive view of neurodiversity. It’s an attitude that can help make life easier. I agree that there are positive sides, but there is also a dark side to ASD, NLD, ADHD, and the other diagnoses I write about. It isn’t all fun. The supporters of neurodiversity don’t talk much about anxiety, depression, meltdowns, difficulties in school and later in work, and the fact that some find life to be less manageable than others. Many hear Asberger and think of fictional characters like Sheldon Cooper and Amy Farrah-Fowler (Big Bang Theory), Amelie Poulain (Amelie), Temperance Brennan (Bones), and Spencer Reid (Criminal Minds). Most of us are neither seen as cool or brilliant.

So I have mixed feelings about neurodiversity. I know some professional health care workers like the term too, but life isn’t that simple to many of us. There isn’t that much solidarity. Words like different and unique may not be that positive. I get the impression that many use them synonomous with queer and bizarre, and I suspect that society will see more of us as weird outsiders after a childhood without support.

The sun illustrates a white hole for the occasion. We need the energy and nourishment it provides.

I like using astronomy to illustrate a point, and black/white holes seem relevant in this case. White holes are highly hypothetical regions of space where matter and light enter from the other side, but nothing can escape from our side. This is the opposite of black holes where everything caught in its gravity is sucked in. It sometimes feels as life is not sustainable, like we need outside resources to sustain life. These are resources society is reluctant to give, and if there’s a chance to avoid it, authorities will do just that. If we use that as a metaphor many of us won’t function properly in a society with a black hole, which is a society that wants our skills, but only if it can get them for free. There are many people with autism, nonverbal learning disorder, ADHD, Tourette syndrome, dyslexia and so that have a lot more potential than they get to show. You need to work before you can harvest, and some need help developing what they have. That is why I don’t think it would cost society in the long run, so even if you only think economics, it makes a lot of sense to spend money to cash in later.

I’m not suggesting a really idiotic communist system where no one considers the cost of giving everyone everything, but a combination would be good. The point is to give everyone a fair chance, and to utilize the talents. My favourite fictional Asberger-like character is Sherlock Holmes (the books), but I wonder how successful he’d be in our society. There might be an occasional Isaac Newton or Wolgang Amadeus Mozart, but I wonder how much talent is lost because they were not genius enough for the surroundings to accept their unique personality.

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Alarming reminders of the past

Photo: David Silva via flickr

I rarely touch on politics on this blog, but I’m sometimes tempted to comment on topics that feel somewhat relevant. The updated New York abortion law is one of those instances.

It’s especially interesting because the Norwegian parliament has discussed the Norwegian abortion law in recent weeks after the governement considered making some restrictions to it (they decided to leave it alone, though). The recently discharged Minister of Children and Family was asked in Question Time whether she recognized the burden it was for a woman to ask for an abortion, which made her share her own story. She was told that she was carrying a very sick child, and that she should consider abortion. This happened just before the 12 week limit where the woman can make the decision herself, according to the law. She decided to keep the baby. It turned out the diagnose was wrong because the baby was healthy.

Many have celebrated the decision in New York because the existing law was seen as archaic, but I’m not entirely sure it’s a step forward. I’m sure there are good things about this law, but there are also some details that could be debated. One of the new things is that abortion can be performed after 24 weeks if the fetus is not viable, or if it’s necessary to protect the life of the mother. I think that means that they can perform an abortion as late as they want in the pregnancy. When we’re talking about late abortions, wouldn’t it make more sense to do a caesarean section?

The other thing that could be problematic is that the law removes abortion from the criminal code. I think that is meant to protect the doctors that perform the abortion, but it also protects men who beat women. According to critics of the law an attacker can’t be procecuted if the fetus died as a result of the attack on the mother. That doesn’t protect the mother, or the doctors, or the healthy and wanted children. It protects woman-beaters and rapists.

The question of abortion is a difficult one. I accept the law, but I disagree with people that say this is easy. It’s a popular argument among abortion supporters that an aborted fetus is not life because it cannot live outside the womb. That’s not obvious to me, as a high number survive a birth after the 24th week, provided they are admitted at a neonatal intensive care unit.

Iceland has almost eradicated down syndrom using ultrasound and blood test to determine whether the child will have a chromosome abnormality. That raises the question, what kind of society do we want? Many argue that people with this and that condition couldn’t possibly have a normal life. What is normal, by the way? Many concider me to be different, too different. NVLD is not an official diagnose, but when we reach that milestone, where are they going to put us? ADHD and autism spectrum disorders (ASD) are already under psychiatric disorders, which I think is completely bonkers.

Many Western countries used to have laws that were more or less eugenics. We had a law between 1934 and 1977 that gave authorities permission to forcibly sterilize certain groups in the population. They were referred to as retarded, mentally ill, or people that would produce “hereditary defects.” I believe it was also used against travellers, because they were “undesirable” in our society. So then the question is, who is normal? Who are the desirables today? How far are we willing to go to keep society clean in the fatherland?

These are just some personal reflections on the matter, but I get a little uneasy when people talk about abortion as an easy solution. There are many cases where it’s the best, but it’s never easy. I’ve heard about several cases where a woman was adviced not to have more children, which would have been bad for the one she decided to have after all. I was my mother’s last child, and could very well have been one of those unadvicable children.

As for normal I’m content with having an interesting life. I’m not like most people, so I guess in some sense I’m abnormal. But life is good. I hope we never get to the point where interesting is seen as a threat.

I’m changing the odds

I use food as medicine. This is a personal favourite, zucchini with tomato sauce, meat, vegan cheese og and milk/wheatfree bread.

There are few things in science that provoke people more than the nature versus nurture debate. I came across an article in Psychology Today that made me raise my eyebrows. I’m not sure I disagree with Professor Robert Plomin from King’s College London. The article is about him and his research on genetics.

Polygenic scores are being developed with the intention of predicting a person’s likelihood of displaying certain traits. Plomin’s position is that polygenic scores are normally distributed, which means that we all have for example genes associated with schizophrenia. What matters is how many we have. So Plomin thinks it’s all about genes. Nurture plays no part at all.

It’s not quite that simple. It’s interesting that they mentioned schizophrenia because I believe there is a lot of environment involved. Before medication diet played a part in treating this condition, which makes a lot of sense. There is a connection between the guts and the brain. The neuro transmitter serotonin is a good example. It’s important for transmitting signals between nerve cells in the spinal chord and the brain, but 95 percent of it is manufactured by gut bacteria. In other words, a healthy diet is not irrelevant.

I experienced a dramatic improvement when I reduced gluten and milk in my diet, but I also think that environment, as in poison, plays a part. Norway is considered to be one of the cleanest places on Earth, so it really isn’t good that authorities here warn against eating shellfish and liver from fish people have caught themselves in the fjords (open ocean is considered to be safe). There are also warnings against the amount of aluminum we get from food (additives) and deoderant. This is a reminder that the environment, although it may not create our dysfunctions, plays a part.

It seems strange to me to say that we are only a result of genes. Plomin used one of his grandchildren  as an example. The child couldn’t speak intelligibly until he was 4-5 years old, and he had great difficulty reading. This didn’t fix itself. It took a great deal of effort from parents, grandparents, and of course from the boy himself to overcome these challenges. In other words, nurture. The vulnerability he was born with was partly overcome. You won’t go from people having no expectations to a leading position in NASA, but you can change the outcome.

I’m not sure I disagree with the professor. He is probably right that there is a limit to how much we can mold children. Perhaps he’s more concerned with personality, while I’m more focused on what parents and the public health/educational services can do to change the consequences of the vulnerable genes. I think it’s pretty obvious that we need both, nature and nurture.

The academics need our help

Progress is so slow, frustratingly slow. I wish researchers could get the funding they wanted, because I don’t think the problem is that no one wants to do the work, but getting funding is hard. I was quite optimistic some years ago when I heard about the psychiatrist William MacMahon at the University of Utah. He had done an autism study in the 1980’s with children aged 3 to 21. A few years ago he decided to do a follow up to see how these children had done as grown ups. I don’t know what happened, but I never heard about this study again, so I don’t know whether it was actually done.

I heard about a Norwegian study around the same time. The researchers followed 74 children with autism and 39 with PDD-NOS, and when they were 22 years old, most of them were on disability pension and they were single. That was a surprise, because researchers had assumed that high-functioning meant that they would manage better, but this shows that we can’t get away with not offering this group any services at all.

The Norwegian government appointed a committee last summer that will assess what services are available and what needs to be offered during a lifespan. The problem I have with it is that they are mandated to assess autism and so-called related conditions, while nonverbal learning disability has been ignored. The government published four videos from a seminar where professionals and associations could make requests and recommendations to the committee. They focused exclusively on Asberger, ADHD, and Tourette syndrome. Where does that leave us if we are seen as irrelevant compared to Tourette and ADHD?

Authorities tend to want to offer us a normal life. I want a meaningful life, whether it’s normal or not. Books and boardgames give me a lot of meaning, and help me to function.

We need more knowledge, so I always welcome new research, but I was surprised when the first new Norwegian research I’ve heard about in years was by a student. A guy at the University of Stavanger wants subjects for his master thesis, and his focus is what people with Asberger have done themselves to function in a recovery perspective, a term often used in treatment of alcohol/drug abuse and psychiatric disorders. The word has synoyms like repossession and reclamation, but I see it as a lifelong commitment. You don’t reclaim your life, or become what you are supposed to be, once and for all. That’s a battle you have to fight every day.

I wish we had more research from professionals, but in a way it’s fitting that this comes from a student. It’s not easy to change established peoples’ attitudes, but the next generation can be trained better. This guy is studying to become a child welfare worker, and those people often end up as case workers in government agencies (municipal or national). It wouldn’t be harmful to them at all to actually know the situation they have to assess. They make decisions that will change lives dramatically, for better or worse, but instead of working with specialists, they sometimes work against them.

There are many reasons why we need more knowledge. People growing up with these challenges need to know more, and the people that are supposed to offer us services need to know more. I wish this wasn’t so complicated, but I sometimes wonder if sexy (generally attractive or interesting, Merriam Webster Dictionary) is relevant in science too. NVLD doesn’t appear to sell the way other conditions do. Personally, I believe autism, ADHD, Tourette, epilepsy, and NVLD have more in common than people think.

I need negative thinking

I look up a lot. I like the light and the dark, the vastness, the possibilities of space. I can even handle being alone.

I tried watching the History channels this holiday. I say tried because it isn’t easy watching this channel. They do have the occasional program I like, but there’s far too much ancient aliens, people chasing monsters in Alaska and people selling junk. I used to be fascinated by UFOs and aliens, especially Richard Dolan. He gave some interesting talks a few years ago on the Cold war and something he called the breakaway civilization. I haven’t followed this topic for years, and found that I wasn’t diverted at all this time. In fact it was boring.

It did make me think, though. I grew up in an overly religious home. Many of the grownups around me were talking about the creepy rapture and other equally bizarre prophecies. There was an anticipation of violence I found disturbing. Many thought that Jesus was coming back. In fact, I got the impression that some people placed all their hopes in that. They found life hard and decided that the best they could hope for was help from God.

I get the feeling that they have a lot in common with some of the “UFO people.” I can’t say I blame them at all, but I concluded that wishful thinking was not helpful. Think about the political leaders we have these days. It’s frankly scary being left alone in a time like this. No. This didn’t start with Trump. Our leaders failed us a long time ago. They haven’t been for the people, of the people for a while. In other words, I don’t think we can look to governments for help.

The idea that we are not alone gives comfort to many. They want someone to come and fix everything. To some this saviour is Jesus, to others it’s an alien. Life can be brutal. It felt brutal when I as a child had to go from my Christmas bubble with all its magic to school with all the battles I lost. I often  wished that ET would come and remove me from the struggles of life. I found that I was the help. I couldn’t count on others.

I have seen, as an adult, other adults that desperately wanted Jesus to come back. Adults have had that hope for 2 000 years now. I’d like that too, and as a Christian I have that hope myself, but I find it hard to deal with constant disappointnments. I’d rather be pleasantly surprised when it happens. My main issue on this blog is independence. I want to manage on my own, and I encourage others to work towards the same goal.

It’s very hard. There are many situation where I don’t know what the best decision is. I hate not knowing, but that’s the reality of life sometimes. We don’t know. We just have to try our best. That’s all I can do. I still don’t like the feeling I get when the party is over, but I try to adjust my expectations. You are going to live through many disappointments if you expect a smooth ride.

I call this negative thinking. There isn’t much room in positive psychology/thinking, if any at all, for thinking about what can happen. The truth is that there are many difficult things in life, and the idea that we should ignore this possibility is harmful. One of the Norwegian broadcasters published an interview this weekend that I found interesting.

It was with Sigbjørn Johnsen, a former Finance Minister in the Gro Harlem Brundtland government, and county governor in Hedmark county the past 21 years. This autumn he lost his job (because two counties were merged) and his wife died from cancer. His attitude was that he will keep the past, he will think of what he had, but also look for new things that can make life interesting. Life can be brutal. It is brutal and I wonder how we’d manage if we never developed the tools to deal with the negative. You do that by preparing and evaluating risks, not by assuming that everything will be hunky-dory all the time.

I also celebrate during the prosaic days, though. Then I remind myself that I have been axtraordinary. I have survived pretty bad circumstances and setbacks. I have been a strong fighter because I didn’t ignore the danger. That’s a pretty awesome way to start the year!

The return

After writing a couple of posts about depression I started thinking about the return. How do we return from the land of darkness? It’s not a pleasant story. This is not the story many want to hear, because there are no easy solutions.

I like looking up at night, but darkess/insufficient information on street level can be alarming. Yet perceived and actual danger may be different.

Let’s start with medicine. I believe drugs play a necessary part in general, but I am also skeptical to the confidence many have in prescriptions. I have explained my uncertainty in previous posts, and it has a lot to do with the quality of research. I’m not going to repeat myself, but I encourage you to read meta-research. The essence of the issue is that we tend to trust someone, not because the study is big enough or duration long enough to produce reliable data, not because the conclusion support those from countless previous trials, not because all research groups had systematically analysed the initial animal studies used to justify later trials on people, but because people with the right degree or employer tell us. In other words. when it comes to science, people are flawless. I still don’t see rejecting medicine as a responsible option, but people do need to research before making a decision. How else could we make an informed choice?

So medicine is sometimes necessary, but not nearly good enough. That’s the point, nothing is good enough alone. I also believe in a healthy lifestyle, as healthy as possible at least. There are certain things I’ve never heard any GP or psychologist talk about, and the gut is one of them. Some of the most fascinating research in recent years has been the gut-brain connection. To put it simply, if your intestines are not happy, there is a good chance your brain isn’t either. This goes both ways, troubled intestines send signals to the brain and a troubled brain sends signals the other way. Researchers call this an intimate connection. Read more on Harvard Health Publishing. In other words, food should be a part of the treatment, and of course physical activity. Incidentally, 90 percent of the brain neurotransmitter serotonin is produced in the digestive tract. Research from Caltech show that a certain bacteria is important in this production.

I have always been a supporter of cognitive therapy. It may not be as simple as talking or thinking your way out of a depression, but I believe it is one of the strong factors. The way we think has a strong impact on us, and if you can change the way you think, I believe you have a much better chance. I came across the post Why You Can’t Just Think Your Way Out of Depression on Psychology Today this morning. I see Clifford Lazarus’ point, but this could be a chicken or the egg-kind of situation. I agree that action is required, but I’m not convinced that walking without thinking is helpful.

I recently discovered an affectivity awareness group, a kind of therapy offered at a Nowegian hospital. It may be more common than I realize, but I’ve never heard about it before. I thought it sounded like an excellent idea. It’s basically a workshop. A small group of patients gather once a week for eleven weeks and they talk about one feeling every time. The idea is to become more familiar with your own feelings, understand them mentally and how they affect the body. This will help in the individual therapy later.

That makes sense to me. Feelings are not just difficult to deal with, they are difficult to identify as well. It’s also hard to find the right words if you simply don’t have the vocabulary. Imagine a small child before he/she has developed a functional language. “I have a stomach ache”, or “I feel bad”, or “it was boring” can be a lot of different things. It’s only later the child can give a more precise statement.

So it makes sense to develop a language and reflect more on different feelings before you talk to a therapist about your specific ones. I often hear the word depression when it may not be the correct one. Sadness isn’t actually an undesirable feeling, it’s not the disorder many seem to think it is. Sadness comes and goes just as quickly, and is usually triggered by something, while depression is a lot more serious, may not be a response to something that has happened to us, and is not a normal situation. It affects us in so many negative ways that we want to restore normality as soon as possible.

I guess my conclusion will be that we need all these different types of treatments. Actually, they are more like skills than treatment. It’s about learning to make life as stable as possible. Some people may never find a cure that works on them, but I hope everyone can find enough.

The positive depression

The message of this lecture is that black holes ain’t as black as they are painted. They are not the eternal prisons they were once thought. Things can get out of a black hole, both to the outside and possibly to another universe. So if you feel you are in a black hole, don’t give up. There’s a way out. Stephen Hawking from The Reith Lecture.

I ended The ghost in the machine with a troubling question, are depressions advantageous? I was thinking about a headline I had seen that suggested it was. The article referred to a study, which may  very well be pseudoscience. There’s a lot of that around, so that wouldn’t surprise me at all. I would at the very least take the conclusions with quite a few grains of salt. The claim was that depression exists because it’s an advantage. Evolution would have removed it if it wasn’t, but this simple logic doesn’t make much sense. There are, after all, many examples of harmful genes that have survived. Why didn’t evolution remove them long before modern medicine could give people a better life with certain conditions?

The journalist had done a decent job and asked Thomas Nilsen from the Aarhus University in Denmark to comment on this tiny study with only 14 participants. He acknowledged that evolution may keep traits that are good for a larger group, but not for the individual. A person who is depressed will withdraw from  social interaction, much like a wounded animal that leaves or is forced to leave the pack. This can be beneficial to the group.

I would still argue that there are good reasons to ignore evolution when it suits us. The theory states that the strongest, or most adaptable will or should survive. Many support that idea. They want the people that don’t show any weakness to win. Depression doesn’t have a role to play in this kind of society. That makes me think of people like Stephen Hawking, Mark Twain, Abraham Lincoln, and Winston Churchill. I believe they understood depression better than most, but they did some of the most important work in their field. I think it’s safe to say that the two state leaders in this quartet changed the world, or made sure it didn’t change too much. Imagine if Churchill had not been allowed to serve his country because people questioned his mental strength. I’m especially impressed by Churchill, who inspired a whole nation during a chillingly dark and evil period in Europe. Think about what came out of that.

People thought nothing escaped a black hole, not even light. Stephen Hawking reminded us that there is hope, even when all is seemingly lost. Illustration: NASA/JPL-Caltech

I suppose you could argue that depression makes you think, which could definitely be an advantage, but a diagnose is usually held against you. Celebrities are often applauded for their willingness to express how  difficult life can be sometimes, but many others are harshly sanctioned for sharing too much. It is debatable how much of an advantageous it really is. On one hand depression can be a natural response to really bad experiences, which means that we need to go through a long process of recovery. Trying to avoid depression would not be helpful then.

There are many nuances of depression, and perhaps it isn’t actually about being sad. Many people define it as extreme sadness, as does most dictionaries, together with difficult states like anxiety and anger. The Merriam Webster Dictionary lists sadness, but also “inactivity, difficulty in thinking and concentration, a significant increase or decrease in appetite and time spent sleeping” etc.

There are feelings in there, but you could just as well describe the condition with words like absence, gap, alienation, divorce and nonbinding. You may understand that you should feel something, but just can’t, possibly because feelings are scary and overwhelming. It could very well be that we protect ourselves by trying not to feel, so we live in a space where everything is removed. There is something called high-functioning depression, or persistent depressive disorder (PDD), formerly known as dysthymia. It’s just as dangerous as any other kind, but these individuals may have found a way to function. They have to force themselves to do their tasks in school/work, and social activities, and succeed to some degree. That doesn’t mean that they are alright.

I think it would help if outsiders acknowledged that depression is a lot of things. It would help if we could express our feelings. I think the film Inside Out got it right. Being human is to have all the feelings.