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.

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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?

Nature nurtures

Psychology Today likes numbers and lists, and 6 seems to be a favourite. They have articles like 6 things daughters of unloving parents need to unlearn, 6 things narcissistic parents do, and Six things you need to know about empathy. I came across another one today, 6 things parents aren’t doing, but should. The article is very naive, but it’s not completely bereft of sensible advice. To be fair, the list is perfectly alright.

Susan Newman starts with a phrase that was used as a line in commercials in Norway some years ago, “there’s no such thing as bad weather, only bad clothing”. That’s an attitude I support, but it’s not true as the article seems to indicate, that there are no risks at all. Number five on the list talks about a culture of fear, but sometimes fear is a logical response. Newman refers to Linda Åkeson McGurk, an Indiana-based journalist and blogger who was born and raised in Sweden.

I understand the point, that children should spend more time outside, but the example about children taking naps outside in winter is not advisable. The risk has nothing to do with the temperature, because a baby will be comfortable bundled up in a baby carriage, but reality has shown that the Child Protective Services in some countries has a very low tolerance, and the problem is that rulings are frequently so capricious that there is no way of knowing what parents can and can’t do. So I wouldn’t recommend outdoor naps in winter.

I like the part about children spending more time outside, though. There was a time when that was natural, and later there were kindergartens and elementary schools in my country that labeled themselves as outdoor schools or nature kindergartens, which meant that they had lots of excursions. When I was teaching 5th-8th grade it was common with a 3 hour excursion once a week to for example the forest or the waterfront. My daughter went to a school that had an allotment a 20 minute walk away where they planted vegetables. This is great, but not exactly the same as outdoor teaching.

I like the idea of not telling the children what they should do, but let them explore and figure things out alone. This is not a “everything was better before and people today are just spoiled brats” kind of post, but I think I benefited from the outdoor experiences I had as a child. I was fortunate enough to grow up in an area surrounded by recreational areas/parks with forests, hills, lakes and streams. I climbed trees, caught fingerlings (juvenile fish) with my hands, butterflies, beetles, and tadpoles (they are protected, but if you release them in the same pond, it is perfectly legal to catch them). I didn’t catch birds, dragonflies, bees, bumblebees, and ants, but loved looking at them. I also built a house in the forest and played in bunkers from World War II.

Plants are perfect if you want to create something for the senses. They are colourful of course, but you can create a lot of wonderful scents as well. I love picking strawberries, raspberries, red currant, and blue berries in summer/autumn. If you want to plant something for the senses mint is a sure winner. There are many varieties (peppermint, apple mint, ginger mint, chocolate mint, licorice mint. I also like spices and flowers like honeysuckle, roses, calendula and chamomile.

When I think of outdoor school I don’t think that everything happens outside of course. That wouldn’t be practical, but it’s a supplement to the indoor teaching. Here are some links that will probably communicate the method better than I could:

Somerset services: Forest school
Kids with autism benefit from outdoor classrom
Nature is the best way to nurture pupils with special education needs

Finding the old me

a cup of bloack coffee. I didn't love coffee at first. As with adulthood it was very much something I had to get used to. I like to add flavours and spices, but simplicity tastes pretty good too.
I didn’t love coffee at first. As with adulthood it was very much something I had to get used to. I like to add flavours and spices, but simplicity tastes pretty good too.

I read a short newspaper article about the Danish professor of sociology Rasmus Willig recently. He believes that the post-WW II welfare state has been replaced by the competition state. We are constantly being evaluated, and to be honest, there’s no way we can win. We are compared to a perfect, impossible standard, and striving for this perfection makes us sick, according to Willig. I think he has a point. The standard is even more out of reach for people that are different, more likely to live outside the box in one way or another, or people that struggle with skills others take for granted.

There are many reasons why you should consider choices like indie, minimalism, and counteracting stereotypes. It is true that policy and lawmakers make life a lot more challenging, but it’s also about the choices we make. We have to be an active participant instead of allowing things we can control, which admittedly is the tricky part. It’s so easy and comfortable to continue in the same track, and I frequently find that I have to make myself do things.

The three choices I mentioned are important because they are not just about you and making your life better; they are also about creating a better society. When you see someone who is apparently poor, maybe even homeless, do you make assumptions about this person? When you see someone that appear to be an aspie, do you assume that this person lacks empathy, and is possibly dangerous? When an immigrant family moves in next door, do you assume that they are a threat to the Norwegian, American, Canadian, English and so on way of life? When you see someone with Down syndrome, is your first thought to feel sorry for them because they couldn’t possibly have a life? You may even think that the parents should have aborted. The truth is that if society is willing to embrace difference, and do the work necessary, everyone can get a meaningful life. But sadly many have prejudices, and most of the time they don’t even realize it.

You can be very accepting of your gay neighbours, but still harbour subconscience attitides towards religion, skin colour, social status etc. I don’t think there are people without prejudices. Some may not know about them because they make these assumptions without reflecting on them, and some may be aware, but refuse to acknowledge them. As with minimalism less is more. This is what Hatter told Alice in Alice in Wonderland:

You’re not the same as you were before, he said… You were much more… muchier… you’ve lost your muchness.

In short, we need to have the right kind of muchness, or to be much in the right places. We could lose some and gain more on our minimalist journey. It’s sort of about finding back to who we used to be. I’m not in position to buy anything at the moment. I wish I could buy a home, but that will have to wait. As for possessions we sort of had to go minimalist four years ago. We were living in Nordland county, which is a three day drive from my hometown, and it would cost well over $ 5000 to bring our stuff to Haugesund. I didn’t know what else to do but to leave all books, DVDs, furniture, kitchen equipment etc. That was a pretty serious blow. So I don’t have a lot of possessions today.

Minimalism now is more about what I focus on. I have big problems focusing. Reading is never easy. It may sound like I hate it, because I have to force myself to do it, but I actually enjoy it. I just find it so hard to focus that it’s difficult, which is partly because I have chronic pain in both arms. That makes holding the book open a challenge, but I do a combination of reading and listening.

I also find writing worth while, and as I’ve mentioned in previous posts I like listening to podcasts. The Minimalists like to ask their listeners on their podcast whether what they are doing adds value to their lives. I believe I have added value to my and my family’s life, but of course I’ll never reach the finish line. I used to call myself a recovering teacher, which means there’ll never be a day when I have officially recovered. I remain a work in progress, I keep moving forward.

It’s also about trying to be the person I want to be, and even though I sometimes feel that minimalists can be a little unrealistic, it’s not a bad philosophy for change because when we remove more and more of the clutter, both in the physical space around us and in our minds, we are more likely to get a life we rather enjoy.

Autism is chaos

blue butterfly. The butterfly effect explains chaos. A butterfly flapping its wings in the USA can under the right circumstances create a hurricane on the other side of the planet. Photo: Pixabay
The butterfly effect explains chaos. A butterfly flapping its wings in the USA can under the right circumstances create a hurricane on the other side of the planet. Photo: Pixabay

My life is a chaos, a complete mess, and I’m so depressed. These are three words many people use a lot, which can be quite provoking when it’s obvious that it’s not true for many of the people using these words.

The Merriam Webster Dictionary defines chaos as “confusion or a state of things in which chance is supreme.” It’s like chaos theory, which deals with the things you can’t predict or control, such as the weather or my daughter’s cat.

So when people (NT) talk about what a chaos or a mess their house, job situation, or life in general is, I am not sure we are talking about the same thing. They have the tools to do something about it, but that isn’t quite as easy for all of us. The butterfly effect is used to explain how small deviations can change the outcone in a sensitive system. It’s a metaphor saying that a butterfly flapping its wings could create a storm on the other side of the planet weeks later. That’s because it has added a minor disturbance, which could explain why seemingly identical conditions fail to produce the same result. No wonder it’s so hard to predict the weather accurately for more than a week, and sometimes they get it wrong. After a nice, sunny day a week ago, the meteorologists reported rain and quite high temperatures the following day. It snowed all day, so I guess there was something missing in their model. You have to leave out some information in the model the meteorologists use, and a small deviation could change the outcome.

My life isn’t in chaos, but it’s easy to feel overwhelmed and distracted. I can’t handle a lot of changes when I work, which is why I’m taking so long to finish my manuscript. The ideal situation for me would be to have a study where no one could reach me for 3-4 hours a day, but that’s not an option at the moment. I’m usually disciplined enough to stay off my blog and off social media when I’m supposed to be working on my book, but living in a small apartment has it drawbacks.

It wouldn’t have been a problem to just take a break and continue a few minutes later, but for some reason that gets increasingly harder. I wish I was able to work in a busy environment, but that has proven to be impossible. There is literally a storm raging inside, and I’m using all energy on detaining that. I’ve heard about writers that like to work in a café. That sounds nice, but I couldn’t do it with all those voices around me.

I’ve been writing about minimalisn lately, and in my present situation that is about reducing chaos. It’s not about what I own and about consumerism, but about trying to find my own space when space is a major issue.

Emotional vision

Photo of hearshaped gingerbread.We surround ourselves with words and symbols, but dealing with emotions directly is harder.
We surround ourselves with words and symbols, but dealing with emotions directly is harder.

Reading something, such as scientific literature, comes with a risk. It might even be dangerous. I’m exaggerating of course because the problem isn’t the literature, but the reader’s interpretation. There could be problems if the readers don’t know how the author defined a certain word. The British professor of developmental psychopathology and autism researcher Simon Baron-Cohen might be an example.

I’ve mentioned him before in connexion with theory of mind, a skill people have to various degree to understand what other people think, feel and want, and to recognise that this may differ from what they think, feel and want themselves There could for example be something that makes a friend or a colleague sad, and even though you may not feel the same way, having theory of mind could enable you to offer the right words and actions in that situation.

Cohen is known for the theory mindblindness, which could be the result of not having theory of mind. There’s no doubt that people on the autism spectrum have different levels of understanding what has not been spoken, but whether the lack of empathy is as pronounced as the surroundings sometimes assume is a different matter. I think people have misunderstood if they think that lack of communication means lack of empathy.

I’m not sure Simon Baron-Cohen has said that, but he has referred to autism as an empathy disorder. That could lead you to think of autistic people as dangerous, which would be a huge mistake. You could make that argument if you follow the dictionary’s definition, but this is a case where that may lead astray. According to Merriam Webster empathy is “the action of understanding, being aware of, being sensitive to, and vicariously experiencing the feelings, thoughts and experience of another of either the past or present without having the feelings, thoughts and experience fully communicated in an objectively explicit manner.”

That’s a pretty accurate description of theory of mind as well, and I think Baron-Cohen is thinking along the same lines. It is more accurate, as Steven Taylor did in Psychology Today, to separate between shallow and deep empathy. Politicians have perfected shallow empathy. They can identify a certain emotional atmosphere and give people the answers they seem to want. Then empathy is nothing more than means to get some advantages, such as power.

The deeper empathy can do more than know what other people feel. It can also feel, but people expect more. They also want action. Empathy requires you to do sonething. It means that you show through you words and actions that you care, which is an extremely close and intimate form of communication. In my opinion the hardest part of communication.

Politicians are strong on shallow empathy, while they may have no problems exploiting people if that’s what it takes to get more power. Taylor also suggested that it was the opposite with autistic people, they may not understand shallow empathy, but the individuals that have empathy, have a strong deep empathy. A ten year old Swiss study suggested that autistic people “perceive, feel and remember too much.” This isn’t limited to empathy, but the study may still have a point. Read more in The Telegraph. Sensory overload is about being overwhelmed, which is not uncommon with autistic people, so why wouldn’t emotions be hard to deal with as well?

When the problem is communication it makes sense that we need to learn how to express ourselves. Empathy can be learned, and one of the reasons many neurotypicals with nonverbal skills don’t, is because they don’t take the time. Seeing, but choosing to be minblind is hardly any better. The problem is that many don’t differentiate between shallow and deep empathy. You either have it, or you don’t. I believe many on the spectrum have more empathy than they are able to express.

Is autism really an empathy disorder?