Give people a lifeline

man in hoodie sitting a;one. Rowling's dementors were a good description of depression. Ron felt like he'd never be cheerful again. Photo: Pixabay
Rowling’s dementors were a good description of depression. Ron felt like he’d never be cheerful again.
Ilustration photo: Pixabay

Anthony Bourdain wasn’t my thing at all. I have heard his name and seen his face on TV, but I put everything food-related in the reality show category, which is not very appealing to me. Not that I’m judgmental or anything. I just don’t find it interesting myself.

I was still saddened by today’s news of his suicide. It’s sad because I know it’s relevant on a blog that covers NLD, ASD, and ADHD. I very much disagree with people that call these diagnoses psychiatric disorders or mental illness, but there is no doubt that people with a diagnose are more vulnerable than others for developing for example depression and anxiety. That can make suicide relevant. I referred to a Swedish study a few years that found that people with autism had a much lower life expectancy than the general population (54 against 70 years, and only 40 years for people with both autism and a learning disability). Epilepsy and suicide are big factors behind this grim statistics. The study was led by neuropsychologist Tatja Hirvikoski at Karolinska Institute.

I was also saddened because this brings back memories of a girl I liked a lot. She was adopted from Korea and we grew up as neighbours. We went out a few times, but we were never close. I didn’t understand her. She was very nice to me, appeared to have a lot of friends, as well as a very optimistic view of life, but at other times she seemed quite the opposite. I always had a sense that there were some issues. I didn’t know what to do, but we went away for school and eventually started our separate families. I heard rumours some years later of an unhappy marriage, and one day I was told that she had killed herself. I wonder how long she had been feeling that life was too hard, if that’s what she felt. I have found life difficult myself at times, but she was one of the people that made it pretty interesting for a while. I liked her, but I wonder today what her beautiful smile was hiding.

I feel that Anna Spargo Ryan’s reminder on Twitter today is an important one. How do you talk to someone you want to help?

One of my reasons for writing about NLD and autism is that I want to encourage people to deal with life. Let’s face it. There is a lot of crap to deal with, but with life skills it is possible to minimize the risk. Sometimes things get too big for us, the world feels too big, and we may want to disappear. In those cases I encourage people to ask for help. The best outsiders can do is to stop attaching stigma to mental illness. Most people will actually suffer from one type of mental illness or another at least once during their lives, so it really doesn’t make much sense to punish people for this.

That’s what we do, we weaken our own society, as well as our own chances when it happens to us, or someone in our family. Think about that next time you don’t take this seriously.

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I write

I lived with NLD for 40 years before I was diagnosed, but I survived. I have survived for another 10 years now with the diagnose. You can live for a long time in misery and being unable to function, but that’s not life. I’m not just talking about staying alive physically, but surviving has also to do with prospering and functioning, which can be hard in a competitive society.

Surviving may not be something we can take for granted because the people that are supposed to help, don’t always understand how it is living with NLD. I was working in an occupational rehabilitation program 10 years ago, but they couldn’t help. I’m sure they wanted to understand, as I’m sure the hospital, my GP, employers, and the Norwegian Labour and Welfare Service have all wanted to understand. They didn’t.

I had to figure out things on my own, and one day I will hopefully be able to describe all my experiences. An NLD-blog shouldn’t be a small niche, but it is in Norwegian. That is an important motivation because I want people to know, to understand. The truth is that a lot of the information about NLD is about children, and a lot of it is too negative. I am not like the literature describes us. Very few of us are. We are more, but our skills and and abilities are scattered. If your first impression is of what I don’t do well, you shouldn’t assume that that’s all I am. I focus my effort on my Norwegian blog, but once in a while I translate a post into English.

An American blogger I used to follow is doing the same as I’m trying to. She wants to publish a book about how it is living with NLD. She also wants people to know that she thought about this before anyone else. I understand the desperate feeling because many of us have skills, but find it hard to show the world what we are capable of. If you compare life to a race, you may see many participants passing you. I have been overtaken by many that entered the race a lot later than me, and this doesn’t always feel fair after the amount of effort I have put in. That’s life, that’s the conditions we have to live with, and I don’t focus much on it.

I had a hard time during my years as a teacher, and now that I’m not working, I’m trying to develop skills as a writer. I have stories I want to write, and as Maya Angelou wrote once “there’s no greater agony than bearing an untold story inside you.” I don’t have all the answers, but I believe I have something to share about NLD, as well as some interesting fictional stories.

notebook, pen and coffee. Ideas can be fickle, but with simple tools and coffee for fuel, I can write anywhere.
Ideas can be fickle, but with simple tools and coffee for fuel, I can write anywhere.

I wrote a script about NLD a while back, and it has been turned down by four publishers. I get the impression that they have read my script, and considered it seriously before deciding not to accept it. The competition among publishers is hard, but I feel that my experiences are publishable. So I plan to edit some more and try again. I’m working on fiction at the moment, and if I can pull this off it’s going to be great. It really is fun seeing my characters come alive in front of me. I can understand the American blogger well because this story has been with me for decades, although it has changed a lot after I started working on it in earnest. It was very unsettled for a long time because with so many other challenges I had to deal with, it was like I couldn’t grasp the idea. It was constantly at the back of my head, but always barred by anxiety and crap. Life happened, you might say. There was always the presence of crap.

I feel that having goals and purpose, things that make life exciting and/or stable, is important. When we experience disappointments or things that make life difficult, it helps to have something to focus on, to rebuild confidence and courage. My main goal these days is to publish, and my main entertainment at the moment is classic literature. I’m reading old favourites, and it strikes me how books like Anne of Green Gables, Little Women, Great Expectations, and Five Aprils speak to me today. I could also add modern classics like A Wrinkle in Time, Roll of Thunder Hear My Cry, and Bridge to Terabithia. These are good books for children growing up today as well.

The hashtag #ownvoices is three years old. I have mixed feelings about it because it suggests that authors can only write about their own lives. According to this thinking only women can write well about female characters, and if your protagonist has a diagnose, you need to have it too. I believe writers can learn, they can understand, but that requires talking to people and to listen.

I may become an #ownvoices author myself because it is tempting to give my protagonist NLD traits. I have certainly been writing with NLD. I’m a writer.

The Game of Life

Pandemic is a very simple, but intense and incredibly social board game. I love games, but not in life.
Pandemic is a very simple, but intense and incredibly social board game. I love games, but not in life.

It makes sense to me to compare life to a game. There are exception, but most of us spend a childhood without major misfortune. This period is a preparation for the game. We don’t realize it, but everything we do in childhood is just a tool for developing the skills we need as players. It’s a demanding game, and to some of us it may appear that the rules change all the time.

It’s hard to determine exactly when the game starts, but the lower secondary school is the first visible sign in Norway that there are differences between us, that we won’t play on the same level for much longer. That’s when we start getting grades, and we realize that to some of us the dreams and hopes we had for the future may not happen. It’s not impossible, but it is hard to change your status at this stage.

I’m an example that change is possible. I spent the entire primary school not doing any homework at all. I’m not exaggerating, unfortunately. I wonder what would have happened to me in the USA, or some other country where they have strict requirements from an early age. I nearly failed my first year at lower secondary school, but as I hadn’t done any work for seven years, I probably wouldn’t even have made it that far in a more competitive society.

I didn’t just decide I hated school. I had NLD, a diagnose that shares many symptoms with Asberger syndrom and ADHD, but no one knew. Neither NLD or Asberger were on anyone’s radar at the time, and they wouldn’t be for a couple of decades. Of course I was blamed, and not surprisingly school made me very unhappy. I didn’t respond by trying harder. I didn’t see the point, but after the shock of almost failing I realized there was a good chance I might end up like my father. I woke up from my apathy. I worked very hard the next two years, and continued in upper secondary school. It didn’t mean I suddenly became a player on the highest level, because I still had to struggle. Learning wasn’t any easier, but I discovered that with enough effort I could pass the exams, and thus move on to the next level.

I have reached all milestones I am expected to. I have arrived late at every step, but I am pleased that I got there. It took me a long time to get a college degree, to get a family (which I am especially grateful for because many of us don’t succeed), to get a job. My career was problematic and full of conflicts, though. The game made me sick and unable to work, but I still see my life as pretty successful. I have a dream of becoming an author, and I believe I’m on track to accomplish something.

I still don’t understand the game. Some people seem to have a unique ability. It’s like being unsuccessful is impossible. They may lose a very lucrative job, but then quickly land another one that may even be a promotion. I assume this is because they play the game well, which requires exactly what I find difficult, understanding the social and emotional world. Some are not good on empathy. They do shallow empathy well, and that is enough to convince people. If you don’t have those kinds of skills, or if you are not willing to play the game that way, you are not going to play on the same high level. It doesn’t mean you won’t get there, but it may take you a lot longer.

I don’t know what is behind, but I sometimes read interviews with successful people that had difficulties, and some even had a diagnose in childhood. They claim that they were successful because they dropped out of school, because they had ADHD, because they had dyslexia, because they didn’t get a diagnose. It still is a game, and this attitude works if you have the tools or skills. If you are selling an idea, how do you convince people to invest in this idea if you have neither education or money? If you are at a job interview, how do you convince the company to hire you if you dropped out of school?

I’m tired of hearing that people with neurodevelopmental disorders are unique, that society just needs to accept our difference, while reality is that society just see an expense. I believe we that are good players and that the countries we live in would benefit from letting us play. The truth is that you need to be the right kind of player, or a worker, to get any kind of respect. I’m pretty content with life. I don’t want the kind of life I need to play for the highest winnings, but I sometimes wish for a little more on behalf of all of us.

Become a better player

A nice walk with my daughter. Different surfaces are beneficial for body and brain.
A nice walk with my daughter. Different surfaces are beneficial for body and brain.

I read the paper Are you living in a computer simulation a few years ago. It was written by Nick Bostrom at the University of Oxford, and it actually debates whether or not the Earth is a computer program. That sounds pretty wild to most people, and it is undoubtedly highly theoretical and speculative, but there are serious scientists working on this. We have to realize that science frequently works with hypothesis, which could mean that it tries to explain something that can’t be observed, which means that there may not even be any evidence that it exists.

Do you remember Pong? The very simple tennis computer game was popular when I was growing up. It was just two lines and a dot moving between them, but today’s games are so realistic it can sometimes be hard to see whether it’s animation or actors. The gaming industry and the military probably have technology far beyond anything we can imagine, and when Elon Musk says that he believes in the simulation theory, it could because he has seen what hasn’t reached the marked yet. Some researchers believe it’ll be possible to upload a human brain within a few decades, and that could give us a virtual society of disembodied brains that make decisions for us. The point is that the option of choosing an alternative reality may be possible in a few generations, so perhaps Nick Bostrom’s theory isn’t that outrageous after all. The next question is what a human being is, and where our place in a world of technology and biology is. That’s what the philosophy post-humanism wants to answer.

I’m not going to pursue the topic now because it isn’t really relevant. It doesn’t matter whether the reality we know is simulated or not. The point is that we have to relate to the only reality we have. We don’t have any choice, but perhaps life is a game after all? Many manage during childhood because the differences between us are smaller then, and most kids get quite a bit for free because they are seen as charming. Childhood is still only a preparation for adulthood, when the game starts. You win points and climb to a higher level if you do well, but many with a diagnose don’t succeed. They may have to struggle on the same level for a while, but most players eventually climb. It just takes some longer than others, and they may not climb as high as the better players.

Social media has created complications because that has added a game within the game. Almost everything we do today is about likes, or a click that expresses some sort of emotional response. You tube has thumbs up or down, while Facebook has thumbs up, a heart, and a spectrum of smileys. I share mostly stories I think are important, and a lot of it is about social criticism and NLD. I don’t share many sunsets and cats, but I do occasionally because that’s what others focus on. I sometimes get an angry red face as a response, but I am never sure what that means. It could be that they agree with me that it was pretty upsetting, or perhaps they are telling me I shouldn’t have shared the story.

I may be throwing stones while living in a glass house myself, so maybe I should be careful about criticizing, but it’s my impression that many use information as a currency they exchange for likes. This happens in some NLD groups on Facebook as well. Perhaps that’s what a support group is for, but I sometimes wonder why relevant information get no likes, while something trivial gets 50.

It’s worse when neurotypicals do this. It’s contagious and we are all affected to different degrees. If you have experienced something exciting there is a good chance you’ll share it. The point of sharing a photo on Pinterest or Instagram is to become popular, appreciated. You want people to tell you how clever you are. Imagine parents constantly hunting the next social media like, and if it fails to come, they’ll mope. It’s not going to do much good to tell their children that they shouldn’t do what their parents are doing. That’s not just unhealthy. It can create children that become dependent early on, and they’ll be unable to focus enough on school and work later. That will have a direct impact on the game. They may not reach the next level, and even if they do later, that will have consequences.

There are alternatives, though. Children love screens (TV, laptop, iphone/ipad/android, PS4, Nintendo Switch etc.). It is also important to keep in mind that they love outdoor activities. We have had great success with art appreciation, ballet, horse back riding, singing, fishing, youth club, visiting friends, and inviting them back. We have a balance between screen time and social/physical activities. That’s a good preparation for the game.

NLD has consequences

The local branch of the Norwegian Autism Association shared a video on Facebook a couple of days ago. They called it a wise young man, and I see the point, but I am still not convinced. The video was taken from a debate program on TV, and it shows a young man speaking about the stigma of autism. I agree with him that many think different in a bad way, damaged, weak, and sick when they hear the word autistic. I also agree that we are not, but I have problems with the idea that it’s the rest of the world that needs to adapt to autistic people. That’s not likely to happen, and would it really be fair?

It’s easy to say that we just need the rest of the world to catch up with us. I have written a lot about this before and don’t want to repeat myself too much, but I like the comparison with other disabilities. What do you think would happen if someone told blind people that there was nothing wrong with them, that they just had a different way of viewing the world? Society doesn’t like to spend money. It doesn’t want to consider people that need support, so if there is a chance they can reduce and even completely remove services, they will do it without any hesitation.

So when autistic people say that no one on the spectrum should receive any support because they don’t need it themselves, they are making life harder for everyone. I listen a lot to podcasts, both for entertainment and education, such as ADHD Support Talk Radio Podcast with Tara McGillicuddy. There’s an episode from april 2015 I have been thinking a lot about lately, Real World Consequences. I like this phrase because it sums up the main point nicely.

No matter what diagnose we are talking about I don’t see how we can expect everyone else to adapt to us, while we justify everything as being our difference. The problem today is that schools and the public health care offer some support during childhood, but not necessarily the right kind, and as soon as the child turns 18, everything is taken away. What kind of help do you think children need?

silhuete of man and woman turning away from each other. It's on the days when we don't want to talk, we need to, which is what makes life a challenge.
It’s on the days when we don’t want to talk, we need to, which is what makes life a challenge. Photo: Pixabay

Organization and social interaction are the main issues for many of these diagnoses. In terms of real world consequences we need to learn strategies for keeping things tidy. You may not see it as a problem if you come five minutes late for work, and stay five minutes longer. Your employer could see that as a huge problem, though. You may have a cluttered house without that many consequences, but the same thing will be a problem at work. There is some information you need to keep straight in your head, and some you need to know exactly where to find quickly. It doesn’t matter how much you think you see the world differently, and how different you are in the best possible way, if the employer just want someone who can do the job.

There’s no way you are not going to experience situation you find overwhelming. Dealing with people can make us stressed and if we don’t have the skills to deal with these difficult emotions, we could either refuse to deal with them or do it in a way no one else is going to see as appropriate. Either way, there will be consequences. The point of the help children get isn’t just to learn the subjects. They also need all the other skills required as adults. I didn’t get any help at all because no one knew anything about NLD and Asberger when I was growing up. There is more help today, but I don’t know that there is enough focus on the difficult life skills. The result could be just as overwhelming and confusing today as it was for me. In short, NLD had and still has real life consequences. That’s why I think it’s too simple to say that the world simply needs to adapt to us.

Minimalism: the new elitist lifestyle

The library in my hometown could have had more variety, but it's still a good place to read newspapers, magazines and journals, as well as printed and audio books.
The library in my hometown could have had more variety, but it’s still a good place to read newspapers, magazines and journals, as well as printed and audio books.

I saw a rather amusing You tube clip from Fox News once. It showed President Obama ordering a burger, and he wanted something plain with spicy mustard, such as dijon. Fox used that as evidence that Obama was elitist, and not a man of the people at all. That’s some quality journalism! Well, it seems that minimalism is the new elitism.

I think it’s fair to say that minimalism is a craze, although it’s lasted for a while. The minimalists are a motley crew, to say the least. This headline from The Guardian, Minimalism: another boring product wealthy people can buy, expresses that splendidly. I actually agree with Chelsea Fagan because, as I have said in previous posts on the topic, there is a certain amount of elitism involved here. You need a fair amount of money to live the kind of minimalist life some do.

This is the kind of minimalism where people live in what looks like show homes. It means that you pay a lot of money to make it look like you spent less. I guess I live in the wrong time period because that feels all wrong to me. In fact, it’s absurd. It also feels wrong to me that new apartments in my home town are getting smaller, but more expensive. I understand that we need to get more people to live on a smaller piece of land, but I don’t think it’s worth it at the prices we have today. I think we are building a giant bubble.

There’s an element of fashion in saving the planet too. You could choose organic cotton, wool and even hemp, but fashion still involves dyeing the clothes, using water and land to produce more, and to keep buying new stuff. No matter how natural the fabrics are, they are not going to biodegrade quickly, so they just add to the pile of garbage, unless we give them to a thrift store. The whole idea with fashion is that you always have the latest flavour, so there is a limit to how green fashion can be.

Why did you become a minimalist? Was it because you wanted a small, chic apartment you couldn’t afford? Did you choose a simple lifestyle because the economy forced you to? Did you believe a change was a necessary reaction to consumerism? There are many reasons, and they may not have anything to do with ethics. I hope I would make some wise decisions no matter how much money I had, but I’d be lying if I said I didn’t want to live bigger.

NLD makes me choose a simple lifestyle. I probably wouldn’t be traveling and buying a lot of stuff even if I could. Less of everything suits me better, but I would spend a lot of money on computers, cameras, and my daughter would get a lot of the gadgets she really wants, as well as a piano and a horse. My wife is from the USA and we would be traveling a lot more to visit her relatives in Arkansas.

It wouldn’t be about spending less, but on spending the money on the things that made our lives better. Like most people I have to prioritise. In order to get something I really want, I have to abstain from something else. Entertainment is important, but I have to do it on a budget. I love reading, but I have problems focusing, so I don’t get to read as much as I’d like. Listening is a good alternative, and here is a list of a few free sources:

Storynory (for young children)
Lit2Go (books that are no loner protected by copyright laws)

Project Gutenberg (you can choose between more than 56 000 classics to read yourself, and many of them can be read with text-to-speech, which should be built into iOS and Android).

Loyal Books (public domain), LibriVox, Learn Out Loud (educational, but not everything is free). There’s also a lot of free stuff on sites like iTunes, Spotify, SoundCloud, and even You tube. Free usually means that anyone can volunteer to read. I find that some voices are so annoyingly bad that I can’t continue listening, but with some patience I always find versions I enjoy well enough. It’s free, so you can’t expect perfection.

The main point may not be to get out of paying, but to avoid buying paper copies you are not going to read. I enjoy owning the books myself, and I like having ancient technology such as printed books. They have the advantage that I don’t need to charge any devices, and I can bring the book anywhere without having to worry about breaking a screen or getting water on it. There are some authors and series I know I can buy without any risk of the book being read only once. Classics like Jack London, Lucy Maud Montgomery, Margaret Atwood, Amy Tan, Sheri Tepper, and Ursula Le Guin would be on that list. I occasionally discover a book I think it’s useful to collect, and a paid service is useful for that. I buy books I have listened to first.

Autism is dangerous

pills on a plate. Pills are a natural part of the meal to to some, perhaps the whole meal.
Pills are a natural part of the meal to to some, perhaps the whole meal.

I’m an avid advocate for various measures that can make it easier to function with NLD, ASD or ADHD, as well as with the comorbid conditions anxiey and depression. I’m not against medication at all, but I am against unnecessary medication. That’s because there is always a risk involved, but it’s worth it when the alternative is worse. That’s why we have doctors. We need someone to consider when we need medicine, how much we need, what type, and for how long. Some people seem to think that we can give children unlimited amounts of any medicine, that anything else would be abuse, but I find that attitude questionable.

Antipsychotics are a group of medicines used to treat conditions like schizophrenia and the manic phase of bipolar disorder, but they are so serious that the Norwegian Medicine Guide warns against using them long-term without psychosis symptoms. They are risky then too, but that’s a situation when the alternative isn’t any better. This reference book refers to metabolic side effects like diabetes, lipid changes and weight gain as frequent, while motor side effects like Parkinsonism and akathisia (makes it hard to stay still), intellectual and emotional inhibitions can also occur.

So I wasn’t particularly surprised when I read about a British study concluding that this group of medicine could be harmful to children. The study analysed anti-psychotics and so-called off label prescriptions in England. That means prescriptions that were give for something else than the drug was developed for. These drugs can have a calming effect and are used to reduces aggression in autistic children.

The researchers went through 3028 prescriptions and found that 2.8 percent of children with intellectual disabilities were given antipsychotic medicine, and 75 percent of them were autistic, while only 0.15 percent of children without autism took this medicine. They also found that autistic children were medicated from a younger age and for a longer period compared to non-autistic children. Knowing the side effects anti-psychotics could have it’s not surprising that this study demonstrated a higher incidence of epilepsy, diabetes and respiratory infection in autistic children. Read more in The Conversation.

I don’t know much about ADHD-medication, but I wonder if there’s a similar issue there. The encyclopedia of medication I referred to earlier says that these drugs should be used when other measures are not enough, or when the symptoms significantly affect the learning or work situation. Atomexetine is recommended if stimulants have no effect, or if you experience painful side effects. It lists common side effects like decreased appetite, abdominal pain, nausea and headache, while increased irritability, aggression and mood swings may also occur in children. I’m not writing this to warn against medication, but there are a number of professionals that ask whether we are using enough non-medication treatment. That costs more and demand more of parents, teachers, and The Educational and Psychological Counselling Service (advice and guides schools on how to help children with a diagnose), but there are no harmful side effects.

Drugs are helpful when we use them right, but if we don’t, even paracetamol can be dangerous. There is a risk, but I have a feeling that many have unrealistic expectations. I’ve heard parents, teachers and health care employees suggest that if the medicine isn’t working they just need to increase the dose like it was an experiment. That makes it look like they don’t know what will happen, but they hope it’ll produce a silent child. At the end of the day this is about how we should define a diagnose. Is it a psychiatric illness or is it a condition that is getting worse in a society that keeps asking more of us.

That’s one of several things we should be discussing. Another is why there seems to be more autism and ADHD than ever before. Is there something about society that makes it hard for people to function? Could it be that we function, but that “the competition society” is sick? If that’s the case how do we make it right?

P.S. I have been careful about pointing to mitochondrial toxicity because it’s hard to find reputable sources. There doesn’t seem to be much research, but as with the pharmaceutical industry in general, it’s hard to get all information soon enough. It’s almost like no one can imagine the possibility that medication can actually be harmful, even though it’s happened before. Nefazodobe was an antidepressant that was withdrawn from the US market years ago, after the discovery that it inhibited mitochondrial respiration in liver cells, which could lead to liver failure. The diabetic drug Troglitazone was withdrawn too, and according to an article on Wikipedia it lead to a drug-induced hepatitis (inflammation of the liver tissue).

We have to consider all aspects, also the fact that doctors may not have all the information they need because there is a lot of fraud in medicine. So how can they know the true effect of the medicine?