You can help science

I have mentioned Jodene Fine, researcher at the Michigan State University, in previous posts. I became aware of her some years ago when she discovered the first anatomical evidence that the brains of children with NVLD/NLD may develop differently than the brains of other children.

A research group in Italy has since done a lot of the new research, and Jodene Fine is working together with them on a new project. They have translated a questionnaire that the Italian team developed, and this will be used in the USA. They are also working on a questionnaire for adults, and then the rest of the world will be invited to take part. I’m going to participate and I encourage other NLDers to do the same. This is very important research. In fact, it’s what we have all been waiting for. We need more research and when scientists want to do the work, we should help them.

This is the blurb provided by Jodene Fine:

Do you have a child under the age of 18 with NVLD/NLD?

The Fine Neurodevelopmental Laboratory at Michigan State University is conducting a research project to better understand the development, medical history, family history, education, psychosocial adjustment, and needs of children with Nonverbal Learning Disability.

Our aim is to learn the unique characteristics of your children and family in order to better define and serve the NVLD/NLD community. The survey takes bout 30-40 minutes to complete and is done on a computer. You can be completely anonymous, or you can provide your personal contact information if you want to be alerted to the findings and other related studies.

Dr. Jodene Fine is a researcher who has been devoted to working with children and families in this community. If you would like to participate, please email Dr. Fine’s lab at finelab@msu.edu. Thank you!

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I found strength in weakness

Holly. I like symbols and pass this every day. Holly, or Christ thorn translated from my language. reminds me of Christmas, and the dramatic voyage of Joseph and Mary. It's a story about courage and hope.
I like symbols and pass this every day. Holly, or Christ thorn translated from my language. reminds me of Christmas, and the dramatic voyage of Joseph and Mary. It’s a story about courage and hope.

I have reflected lately on why I started blogging about NLD and ASD. I was thinking consciously of my writing when I started eight years ago. Writing was a tool I used to explore the diagnose, the world, and myself. I used it to understand the world and to help me find my place in it. I’m still trying to make sense of things, but the blog has gradually turned into a breather, a little escape from the world. sort of my man cave.

I edited a few of my posts and wrote a 70 000 word manuscript that I sent to the biggest publishers in Norway, but I put the project aside after my latest rejection in May this year. I planned to come back to it later, because I’m working on a novel a the moment. I did a lot of work on it this summer, but find it hard to concentrate at the moment. Having problems focusing and living in a small apartment with a family makes it hard to find my own space. So that project is hibernating as well at the moment, but there will be a solution within a couple of weeks. We’re moving to an apartment where I’ll get an office, so the work environment should improve.

I haven’t given up my NLD-project. The publishers didn’t see the potential in what I was trying to do, but hopefully I can show more when I have edited my script. In a way it’s my challenges that helped me write. I was never a brilliant student. I studied hard at all hours of the day, but I was still far behind the other students. My writing was pitiful, but I developed it later, and my blog was especially useful. I found something positive when I thought everything was lost, and I’m quite optimistic today. I feel pretty good about life and I believe the field of NLD is making some progress too.

I can understand the publishing houses. They have a colossal amount of scripts to read. It was unfortunate that I didn’t get feedback, because it would have been useful to know what they liked and didn’t like. I still think my book has potential. It’s a very personal project. It’s partly about who I am, what I am. I have tried a lot of different professions, but everything turned out to be wrong. I don’t know if I can call myself a writer either. The word could be used as a synonym for author, but technically it’s just someone who can produce written words. I can call myself a writer no matter how the quality of my text is, but I’d like to be an author people want to read.

In terms of non-fiction the publishing houses are looking for content of course. They want the manuscript to present something new, new material or new ideas about an old material. It’s also important to have a voice, because it won’t do you much good if you are not the right person to tell the story. I have heard quite a few knowledgeable speakers that shouldn’t have given their own presentation. That’s just the way it is. We don’t have all the skills we want. I don’t know yet if that’s me as well, but I believe both voice and content can develop into something.

NLD has struggled with anonymity for a long time. It’s not easy for any voice to be heard, but I want to try again. A search for nonverbal learning disability on Amazon gives you a list of 133 books. I don’t think the only Norwegian book on the topic is available on this site, but I like that book. It’s not enough, though. It was written by professionals, for professionals. It’s important with more books, but also from people with the diagnose.

Research tends to focus on children, but many of us grew up without a diagnose. We had the difficulties the literature describes, but we had to manage alone in a world that didn’t know NLD existed. It may not help with professionals that know, or think they know, either. Many of them have expectations. We need to behave in accordance with their textbooks from university. There are also the consequences of not functioning. Other conditions have so-called delayed injuries/reaction (cancer treatment can be brutal on the body for example). That seems like e relevant NLD-term as well. Life can be brutal when childhood is over, and long before. Imagine feeling different. It could be that you feel that something is wrong, that you don’t fit in. You can see that you are unable to do the things everyone else can, but you don’t understand why.

I was one of the many trying to figure things out. I wanted to understand life, and myself. I wanted to understand why I wasn’t like everyone else, why I constantly failed, but I didn’t really have a chance the first 42 years of my life. It hasn’t been easy the last 8 years either, but getting a diagnose helped. I could start making sense of the world, and find my place in it. That is demanding work as an adult, because changing a stable, fixed personality is complicated. That’s why we have to start early, and that is a part of my project. I want people to know that there are things that can be done. A diagnose like ASD or NLD doesn’t mean you can’t have a good life. You can, but it will require a lot of effort from yourself, your family, teachers and health care professionals.

We need voices, and I hope to develop a publishable one. We could always need more, so I encourage others to write too.

New NLD research makes me optimistic

The view from a hill I enjoy walking to shows a part of my town. White matter is the network of roads between the houses/grey matter.
The view from a hill I enjoy walking to shows a part of my town. White matter is the network of roads between the houses/grey matter.

I’m quite busy at the moment, but when things settle down I intend to read a book Jodene Fine suggested recently. She’s a professor and researcher at Michigan State University. I wrote her, and about her, three years ago. I was optimistic when Fine published research suggesting that the brains of children with NLD are different than other children, including aspies. I thought this was going to be the start of something we haven’t seen yet, widespread research. It wasn’t.

I mailed Jodene Fine again recently and received an encouraging reply. She told me that a group of NVLD scholars are meeting regularly to try to write diagnosis criteria for the new round of DSM. That’s very encouraging, and perhaps it should have been done a long time ago, because as Fine admitted in her response, getting funding for NVLD reserarch is quite hard. Not because this field doesn’t deserve attention, but because it’s not included in DSM or ICD. Incidentally, WHO released ICD 11 in June 2018, but it won’t come into effect until January 2022. That’s because all member states will need the time to translate the document and train health care professionals.

The group that is currently working on the criteria are trying to change the name from NLD/NVLD to something like Visuospatial Processsing Disorder, which makes a lot of sense to me. I have speculated in some previous posts whether diagnoses like ADHD, ASD, and NLD had something in common. They are different, no doubt about that, but it appears to me that they may have some things in common. Some people refer to autism as a connectivity syndrome, which means that the different parts of the brain don’t work as well together as they should. That tends to overload the brain cognitively and emotionally. Things take longer time for these people and they get exhausted.

I haven’t read anything about that concerning NLD, but when I read about white matter, I wonder if there is a similar thing going on. A popular description I read once referred to white matter as the subway of the brain, connecting the grey matter from different regions of the brain with each other. You definitely want a lot of it, and you want it to be fast. NLD isn’t Asberger syndrome, but I believe it’s a syndrome, which means it’s a group of symptoms that together cause the challenges. The end result might be the same, a problem with communication and mentalization, understading different situations.

It’s not that I need NLD to be Asberger, but it seems wrong to me that children growing up for the most part have to manage without any help, which is hard to accept. Some like the view that these diagnoses are a natural variation in the human genome, but I believe that to be a damaging position. Growing up with ASD, NLD, and ADHD is very hard. The world is confusing to many of us. It frequently doesn’t make any sense at all. There is good news, though. Life isn’t over. Most people with these challenges can have good lives, but it’s important to start early. I was diagnosed at 42 and have found that it takes a lot of effort. The personality is quite stable, and I sometimes wonder if that is a defense built into our brain. Some have more resilience than others, but it is possible to beat overwhelming odds. It may be a disadvantage that adults find it so hard to change, but this can also help us not giving up on life.

It was encouraging to hear from Jodene Fine. I leave you with an Italian study by some scholars Jodene Fine has worked with. In this they tested two groups of children, one with NLD and one with Dyslexia. The test showed that the NLD-children struggled more with the visuo-constructive version of the test, while the Dyslexic children struggled more with the perceptual part. It sounds to me like we are making progress, and this might be the start of an official diagnose. I plan to come back with more information later.

I eat a lot of medicine

Cup of tea. I'm with C.S. Lewis who said that you can never get a cup of tea large enough or a book long enough. I like adding spices to my tea.
I’m with C.S. Lewis who said that you can never get a cup of tea large enough or a book long enough. I like adding spices to my tea.

Science is amazing! I love science, but science also has a problem. It’s hard getting research funded, which is a major problem in NLD research. That’s because it’s not included in DSM 5 or ICD 11. Science is also competitive and no one wants to publish a study that won’t get headlines.

Scientists are not supposed to draw conclusions that are not supported by their findings, but we know that probably happens. That’s why you can find headlines about studies that try to replicate other studies, and fail to get the same results, which is an important requirement. Many studies are small, and as interesting as they may be, the conclusion may not mean much until another study has confirmed the findings.

I was surprised when I looked at nrk.no late last night. The state broadcasting corporation (basically our PBS and C-Span) had an article about a study they presented as groundbreaking. It was a study stating that eating a lot of fat and sugar could lead to depression. This was the conclusion after researchers in Britain, Spain and Australia had examined  41 previous studies looking for a link between food and depression. The Guardian  also wrote about this study.

NRK also asked Norwegian researchers for a comment, and they were not yet convinced that diet was relevant. I’m not that surprised because I’ve come across that attitude here before. It’s one that drives foreigners crazy, which I totally get. It’s an attitude or extreme skepticism to anything and anyone foreign. I encounter this among health care professionals as well. They trust Norwegian research, and some are updated on international studies, but I frequently encounter opposition and resentment. B 12 injection is a good example. I had heard that some had tried that with good results, but I talked to a dozen GPs before I met with one that was willing to consider it. The others had said that it wasn’t necessary and a couple of them even claimed that they were not available in Norway. Then I talked to a doctor that was more pragmatic. He felt that getting an overdose was more or less impossible, and he had read research about a positive effect on Alzheimer patients, so he wanted to try it.

Some of the most fascinating research in recent years has to do with a link between the gut and the brain. There are neurons in the gut and these are connected  to the brain through the nervous system. I recommend  this article in Healthline, and its footnotes for further reading. As a result of this information this family has been conscious of diet in recent years. Dieting to us doesn’t mean eating less than we need, losing weight, but we use food and activities as a way to function better. That makes food medicine. I’m not anti-medicine, but I am anti-unnecessary medicine. My comorbid conditions are mild enough that I manage without medicine, but I recognize that some need drugs.

The path to transhumanism

The photos of Einstein are as iconic as the man, but whether or not he was an aspie is pure speculation. Photo: Wikimedia Commons
The photos of Einstein are as iconic as the man, but whether or not he was an aspie is pure speculation. Photo: Wikimedia Commons

My previous post, The dark side of neurodiversiy,  may have raised a question I didn’t answer. There is a contradiction between the notion that the prevalence of developmental disorders we have today is natural, and the fact that this makes life harder for many people. Some  might say that the problem isn’t the positive views expressed by neurodiversity advocates. The problem according to these people is how society treats people with diagnoses like autism, nonverbal learning disorder, ADHD, and Tourette. It’s society’s reaction that complicates life. I suppose there is some truth to that, but I can’t envision a world where everything is natural.

My wife is an African-American albino. She has some pigment in her eyes and hair, but she has to protect herself from the sun. When you apply the neurodiversity argument on other groups it makes a lot less sense. Why would my wife protect herself from the consequences of daily sunburns? Her condition is after all natural, so she shouldn’t have to adapt to the environment. I know a family where two generations have schizophrenia. I don’t know whether researchers have found indisputable proof that schizophrenia is hereditary, but as it frequently occurs in several generations of the same family, that seems plausible. Does that mean that we shouldn’t treat them? After all, these people just have a different way of functioning, they just see the world differently. I hope everyone can see the folly in that argument.

So why is autism natural, but not other genetic deviations? I agree that autism includes qualities that have benefited mankind. Many aspies have qualities that may have produced a few geniuses, but what about the rest, and what happens if the rest is an ever-larger group? In an attempt to make people proud of being a part of this group some have pointed to important people in art and science they claimed had Asberger syndrome, but it’s impossible to compare the world they lived in with ours.

Many of the popular examples came from affluent families, and I’m willing to bet that a few of them didn’t have to go to public school, and they probably received a lot of help others didn’t have access to. Emily Dickinson and Isaac Newton were known for an introverted personality, and the latter was reportedly quite inflamed. Giving them a diagnose isn’t that simple. I can imagine a man like Newton being a lot more knowledgeable than anyone else. Maybe so much that he didn’t really have peers, and if he wasn’t particularly patient either, I can see this producing a behaviour that people would see as autistic today. A more interesting question would be how these geniuses would manage today. Would they get a chance if they insisted on not adapting?

I’ve met a few people with Asberger, NLD and ADHD over the years. It wasn’t hard to find their good sides. They had plenty of positive qualities, but claiming that there wasn’t something else there as well would be too romantic. That would be like a fictitious character, which is frequently based on stereotypes. I try not to refer to characters when the creators haven’t stated specifically that they had a diagnose, but there are a few drama series on TV with characters that many identify with. I haven’t watched Criminal Minds for years, but I liked Spencer Reid. I have read Sherlock Holmes the past 30 years.

Some of my skepticism to neurodiversity is precisely because life isn’t a drama series. The prevalence of autism and ADHD is increasing. I haven’t seen any studies showing the development of NLD, because there isn’t much NLD research at all, but it’s reasonable to assume that the situation is the same as with its close relative Asberger. At the same time there is not much indication that the prevalence of people functioning better is increasing. The difference between high-functioning and low-functioning doesn’t seem to be significant. That should worry more people, because if society produces more people with a developmental disorder, in other words people that are unable to do what is expected of them, how will that impact the job market?

I have written several posts about the future, and especially AI. Many people think that AI will take many of the jobs that have required people. One thing to consider is that when people like Bill Gates and Elon Musk address this issue, they want us to get used to the idea. These investors will benefit from an AI-driven economy, so they naturally are eager to share their visions for the future. We could get a situation where we don’t have a choice. The population increases, but perhaps with fewer people that are capable of doing the work.

The dark side of neurodiversity

a path in the forest. There is something symbolic about this path. The colours, the light, the joy may fade at times, but if you look up it can be found again.
There is something symbolic about this path. The colours, the light, the joy may fade at times, but if you look up it can be found again.

I don’t understand politics. Politicians frequently say things that don’t make any sense to me. Donald Rumsfeld is a good example. Consider this classic quote from 2002:

Reports that say that something hasn’t happened are always interesting to me, because as we know, there are known knowns; there are things we know we know. We also know there are known unknowns; that is to say we know there are things we do not know. But there are also unknown unknowns – the one we don’t know we don’t know.

This statement was ridiculed at first, but according to an article on Wikipedia it gained more respect and recognition after a while. I suppose it was an intelligent line of reasoning that required intelligent listeners, and I wasn’t worthy of reaching the correct conclusion. I find the statement quite disturbing because the context was the lack of evidence that Iraq had supplied terrorists with weapons of mass destruction. It sounded to me that they wanted to act without evidence or an understanding of the situation. That would certainly explain a lot.

This is interesting background information for what I want to write about. Someone recently read a post I wrote last year about autism and Darwinism. It’s an interesting question why we still have autism, because if we are to believe in evolution, which makes sense to me, shouldn’t autism have disappeared a long time ago? The fact that these symptoms are still with us suggests that we may need them. I believe we need aspies, or the traits they have, to produce a few geniuses, but I think many tend to exaggerate. I’ve read many blog posts and messages in online forums stating that aspies created the modern world, that none of us would be here without aspies. In other words, autistic people are the elite, and everyone should be grateful for the services they have done to mankind. That’s what many want children growing up today to believe, but the truth is a little more complicated. Yes, scientists like Einstein and Tesla may have had certain traits, but that doesn’t mean they would have been given a diagnose today.

There is an increase in the prevalence of developmental disorders, but we also seem to produce fewer geniuses than ever. Someone shared a video on Facebook once. It showed a young aspie stating that there was nothing wrong with him. It was the rest of the world that had problems keeping up. I like the positive attitude, but I sometimes wonder if we are creating disillusioned people. What happens when they discover that the world isn’t anywhere near what they were told during childhood? Some have to face a world that isn’t as willing to embrace their particular distinctiveness as they have been told.

There is something Rumsfeld-ish about neurodiversity. The world is what they choose it to be. The actual state of things seems to be irrelevant. In my experience the world is good at identifying differences. Not because it wants to include all of them and create a diverse society, but because it wants to weed certain differences out, such as autism. Many people don’t care how exceptional you are in the most positive sense of the word, if that means they also have to get used to a behaviour they don’t like.

Yes, I agree with the neurodiversity activists that there is no need to be ashamed. There are many positive sides, but many of us don’t live in the world they describe. Many with Asberger syndrome for example have interests and a passion that should make them competent as scientists, artists, engineers etc. These are success stories, stereotypes. There is also a danger of increased isolation. A study published in The Lancet confirmed other studies with findings of increased risk of depression and suicide (planned, attempts, and lifetime ideation). A Swedish study found that the risk of premature death is 2.5 times higher for people with Autism Spectrum Disorder compared to the rest of the population. This study also reported suicide as a major reason, as well as epilepsy. I could also add diabetes, because although there may not be a direct link, factors like depression, isolation, inactivity, and a bad diet could lead to obesity. The end result could be a dark side of neurodiversity.

This side shows that being different can be hard, especially if this difference influences social interaction and communication. There is something here that neurodiversity frequently doesn’t address, because if we need these genetic variations, why are they so difficult to live with? Why is there a constantly higher prevalence of something that makes life harder?

The good thing is that we can do something about this. We can change the conditions of life, but not by embracing neurodiversity.

 

The machines will make us human

When the rain is blowing in your face
And the whole world is on your case
I could offer you a warm embrace
To make you feel my love
Bob Dylan

Do you remember the song Make you feel my love? I wrote this post on my Norwegian blog yesterday, and working on it made me think of this song. The short version: People feel and act (although less today), machines don’t.

I’ve had an interest in Artificial Intelligence (AI) for a long time, which isn’t surprising as I have loved science fiction since childhood. Authors in this genre have asked themselves the questions we need to ask long before the issue forces us to. I’m among those who think there is reason for concern.

It’s not a problem today, because even the most modern machines are idiots. They are not able to think, and even with their cameras and sensors, they rely on people’s input to navigate. They can’t improvise because they don’t understand their surroundings, but we are getting closer. It’s reasonable to assume that we’ll see the machines portrayed in I, Robot, Terminator and Star Wars long before we get the kind of propulsion systems the fictional crafts in these films have.

It still won’t happen anytime soon, but it isn’t unlikely that my daughter will get to interact with machines in her old age. Some are worried about the consequences and have warned against giving these artificial life forms a human appearance. There are also researchers today trying to develop technology that will allow them to upload information to a human brain. The implication is obvious. What are you going to do if you don’t have the upgraded brain? Stephen Hawking was one of many that warned against the possibility that AI might replace us.

That’s a common sentiment in science fiction as well. When the machines realise that they are vastly superior in all areas, why would they continue taking orders from us? Another question is what we are going to do if the machines do all the work. Bill Gates suggested taxing the machines:

Reaching out to the elderly, having smaller class size, helping kids with special needs sounds great. It does require coorperation and a willingness to do the right thing. That’s not what we’re seeing in politics, and contrary to what some choose to believe, this didn’t start with Trump and Putin.

I read articles from time to time about researchers with admirable goals. The latest I came across was a project at MIT trying to create a tool that could help aspies understand whether a conversation is happy, sad or neutral. Read more on MIT News.

There are a number of articles online embracing the positive sides of technology. They conclude that people with ASD, NLD, and ADHD will get much better lives with technology. It’s hard to argue with that, at the same time as it makes me a little uneasy. When no one can see any danger, there could still be one. I heard some years ago that the internet would make us less isolated, and although this has given us many opportunities we didn’t have, many also interact less with people face to face than they used to. That sounds like increased isolation.

I think machines will gradually take over more of the work people do today. There will still be people making important decisions, I hope. We won’t have real artificial intelligence for a long time, but even when we do, people need to maintain and create technology. There will also be a need for people who care. A machine can lift the residents in a retitement home in and out of beds, but only people can make us feel loved.

I hope there’ll be more room for that in the future. We don’t care nearly enough today, but if the machines can give us the time and energy, it would be a good thing. There would be no point in giving us the time if we waste it on ourselves, which is what we do today. We could get new professions. Many of us have an ability to work, but not in anything that would give us enough income. People that are disabled today could become abled tomorrow. The future may not be dystopic. We’ll have the option of creating a better society, but I’m skeptical.

This is the romantic view Bill Gates has, but of course he represents the corporations that would benefit from AI. He wants us to enbrace this change. We already have the means. The gap between rich and poor increases, and the few super rich controls a bigger part of the wealth. There are many schools that don’t want to spend money on special education and the resources children with a diagnose need. It’s so common now with abuse and neglect in retirement homes that media don’t bother reporting it anymore. Our societies have never been richer. We have never been better equipped to care. Yet we don’t.

I don’t want to sound like a prophet of doom, but we have a lot of experience with corporations and governments being allowed to decide how much they should care (minimum wages, health care, medicine, schools etc). I think Bill Gates is too optimistic when he assumes that time and money will make us care. We don’t appear to be that human. No one speaks for us today, so who will do it tomorrow? A less human society doesn’t seem that appealing.