The you, you want to be

bubbles in a bowl. I love the symbolism in bubbles. They are a short, magical moment that can't return, and they offer me a brief protection from the outside world, as well as a reminder of the other mes.
I love the symbolism in bubbles. They are a short, magical moment that can’t return, and they offer me a brief protection from the outside world, as well as a reminder of the other mes.

Have you ever wondered what would have happened if your life had taken a different path? That was the beginning of an intriguing radio ad for an airline I heard recently.

It may not be a good idea to worry too much about what ifs, but I sometimes reflect on this. It’s like living in a bubble universe, and I have a different life in another bubble. What if I could escape to one of the other bubbles, or get the life the other me has? I also think about how I can change the course of my life by making good decisions, which is what I’ve done.

I live in a bubble where I’m a man from Norway who married a black woman from Arkansas, USA. I also live in a bubble where my own family is more important than the one I was born into. Another decision I made was not to hide. Many people with developmental disorders, and their comorbid conditions, have the ability to hide, or do they? Many of us struggle on the job market, but some would probably have managed better if working part-time was an option. It’s not always financially realistic, so we try for something that may not be possible. I was, in a way, encouraged to hide. I was adviced to always hide my weak sides when I applied for jobs, and I tried, but found it uncomfortable promising the employers something I couldn’t possibly give them. I suppose I succeeded because they usually didn’t get what they expected. It wasn’t enough to get a competent employee, and I was often the best qualified, because they always wanted more.

I was one of those that had to live for a while, and get some pretty brutal  experiences on the job market, before I was diagnosed, but that wasn’t the end of it. I didn’t know what I was hiding, but I did try to the best of my abilities to hide myself the first 42 years of my life. I reached that age 9 years ago, which is when I knew what I was. The halfass medical review concluded with nonverbal learning disability, which was at least a place to start.

I didn’t want to live under cover any more, so I started being open about it. There were multiple reasons for telling people about NLD. I guess I wanted to educate people, because I still encounter GPs that haven’t heard about NLD at all. I moved last year, and the first doctor I went to in the new town had to make me repeat nonverbal learning difficulties five times before he concluded that it was irrelevant. I had finshed school, so what did I need to learn?

That would have been a major WTF-moment if I had had expectations, but 9 years of experiences like that doesn’t exactly give you any. I knew I had to travel down the path towards change, and my potential, without much outside help. I travel partly alone and partly with my family, which is why I call my blogg I am more. I want to show that I, we, and people with related diagnoses, are more than people think we are. I may have started out with some disadvantages, but I think I made pretty good use of what I had.

Hiding who you are is a perfectly acceptable response. It still is, because as much as the society I live in claims to be more tolerant than ever, that doesn’t mean the same as acceptance. Making people aware of us isn’t enough, because they can still ignore us, and they do. People can still choose not to accept us, to discriminate. So I have chosen to show part of my identity, hoping things will change. There are things I’d like to write about, but some restraints are necessary. Besides, no one wants to know everything. No one is that important. There is such a thing as TMI, but I find that revealing some of my personality is useful. The alternative is that you’re always on your guard, and then I mean always.

It would be like cosplaying every time you went outside, and perhaps you wouldn’t know yourself who the real you were. You’d know that it wasn’t you people liked, it was your cosplay character. Being you could put you in charge. I’m far more interested in negative thinking than the positive crap. The latter is frequently associated with a fruitless quest for happiness, while the negative deals with the diffcult things we don’t want to think about. It’s a tool we can use to identify problems and figure out a way to solve it. So negative thinking is more about being prepared than about being negative.

It’s about finding a balance, and I suppose the same goes for our identity as well. You don’t want to reveal everything, but there may be a part of you that needs to come out. We have enough challenges as it is, but if we can figure out what parts of us to show, and how much, we might get an easier journey. We might find the white holes that could transfer some of the content from other bubbles, and into our own. We can get in touch with the other us, the us we want to be, or the us we need. We may even find an earlier us, one we liked, but had to leave behind.

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The important questions

The NVLD Project may be the most popular site about NLD/NVLD, and as this organization has close ties to the Department of Child and Adolescent Psychiatry at Columbia University Medica Center, it’s one of the more official ones. The university has taken the initiative to do the necessary  work to get NLD included in DSM, and this site is a part of that. It’s about raising awareness about what NLD is and isn’t, which coincides with the goal I have for my own blog. In my case it’s about showing that we are more than people see, that I am more. This is how we can all contribute, or you could become an ambassador.

The NVLD Project have something they call Project Social Ambassadors. The present ambassadors have written a short biography, and they conclude by answering one of three questions:

What is your most treasured possession?
Who is your favourite TV show character and why?
Who has influenced you the most in life and why?

I suppose these questions are meant as a help to reflect on our own experiences, and how they have shaped us, as well as tell others about ourselves. The questions are simple, but hard to answer. I have mixed feelings about the first one, because if I am to answer with something that has had a strong impact on my life, it would have to be books. They have always been important to me, which is quite illogical. I was drawn towards books from en early age, but the logical thing would have been to hate them passionately. I had big problems learning to read and write, which made school all the way up to upper secondary school difficult. So why didn’t I just give up? I don’t know, but I continued trying and I finally started seeing improvent in 8th grade. Reading speed, comprehension, and memory was still weak, but I discovered that being headstrong had its advantages.

It’s also sad because I’ve had to give up many books. I had to move a lot to get jobs, and I moved from Telemark to Nordland county in 2012. It was a three day drive, and my new employer paid for the moving truck, which cost almost $ 5 000. I couldn’t afford that when I lost that job two years later, so I had no choice but to leave all my books. There were a lot of treasures in that collections, but oddly enough there are four specific books that come to mind, Cosmos by Carl Sagan, Heimskringla by Snorre Sturlason (the Norwegian Kingsagas, a modern copy of the book published in the 1220’s), a complete collection of Sherlock Holmes, and a collection of classic Science fitction stories. I bought two of them myself when I was about 14 and two were gifts around the same time. They have been important to me, and it was hard to give them up. Writing means just as much today, and as much as I love reading, the answer right now is probably my computer. I’m writing a fantasy novel, and my plan is to send it to a publisher at the end of this summer.

TV series are complicated too, because there is a lot of crap, but I’ve always been fascinated by Star Trek, and when I have watched the last episode, I start over again. I do that with all the Star Trek series, except for The Next Generation, which was mostly a letdown. I also like the old Star Wars films, but I’m usually drawn towards outsiders, characters that have to live in a milieu where they don’t feel at home, such as Spock, Worf, B’Elanna, Odo, and T’Pol.

It’s not that easy anwering the last question with specific people. My closest family has been important of course, but I try to keep them out of this blog. Maybe that’s why some ambassadors replaced who with what. Fantasy or imagination has meant a great deal to me. Writing is very therapeutic, and I’m usinng that to my advantage, as I did with my thoughts in childhood. My ability to create characters and worlds helped me when school made me unhappy, and during the years when my social life wasn’t what I wanted it to be. There’s a long list of authors that let some light into my life, and hopefully I can do the same with my stories. Language really is magic.

The people we choose to see

The Icelandic documentary Seeing the Unseen will be released in four days, and it’ll show how autism has played a role in the lives of 17 women. I started this post with a teaser in the form of the poem “We are Proud Autistic Women”. It was written in English by Kristy Forbes, Kristin Vilhjálmsdóttir and Þóra Leósdóttir, and I assume the two latter translated it into Icelandic (the video has subtitles). I enjoyed the poem, but in my opninion the Icelandic language is in itself beautiful poetry. It’s facinating thinking that it could have been my language as well, if Swedish and Danish had not influenced Norwegian so much that we went our separate ways.

The title Seeing the Unseen refers to the fact that a number of girls spend years as women before they get a diagnose, and a few never get one. They are, for different reasons, not seen. Some like to pretend that there is no such thing as gender, but I don’t think it would be wrong to say that boys and girls are different. We have different expectations to girls, and it does seem like it’s more important for them to form friendship and to fit in. That could be what motivates some girls and women to observe behaviour in others and copy it.

I appreciate a film like this one, and perhaps it’s important that it was made on Iceland. There was a significant international focus on our neighbour a couple of years ago, because Down syndrom is almost non-existing on the island. Pregnant women are encouraged to take a test that will reveal the likelihood of a baby being born with Down syndrome, and as a result close to 100 percent choose to abort after a positive test. The situation is similar in Denmark, and the Norwegian law isn’t that different. It says that abortion can happen after the 12th week if the pregnancy, the birth, or the care can put the mother in a difficult situation, or if there’s a chance the child could get serious illness as a consequence of genetic traits, illness, or harmful effects during the pregnancy. We can argue whether to use the word injury/damage or deviation, but it is a fact that some countries justify abortion as a method to eradicate Down syndrome. It happens here too of course, but the difference is that there’s no pressure. I suspect there is elsewhere.

It’s easy for antiabortionists to say that abortion is wrong in these situations, because they don’t have to live with the decision they want to force on people. We also have to admit that pro-life involves parents and the rest of the family, and there are situation when abortion means that you choose life. Besides, if we are to let everyone live, society also needs to help the families. An alternative to abortion no one could object to would be to allow women to hand a newborn over to the hospital, which is exactly what society doesn’t want. It wants to reduce expenses. That’s a different post, but I wanted to make the point that it could be significant that this film was made in a country where diversity is tainted. Perhaps we have an even greater reason to feel shame, because we like talking about how wonderful it is being different in Norway. Many of us know it’s a lie.

We have more than 20 000 genes in every cell in our bodies, and some people are born with various degrees of deviations. One of them is called 15q 13.3 microdeletion, which means that a small part of the genes on chromosome 15 are missing. Professionals in my country use a word for it that translates to vulnerability variant, which means that there’s a wide range of possibilities. Some people have no or few challenges, while others may develop diagnosis like epilepsy, autism, learning difficulties, anxiety and schizophrenia.

I don’t think it’s implausible to outline a possible future where more and more genetic deviations are treated as Down syndrome on Iceland. The Norwegian Parliament passed a law in 1933 that allowed them to sterilize mentally ill, travellers, and “socially mismatched” people. It wouldn’t surprise me if we walked down that path again.

I hope this film creates some debate on Iceland, and perhaps in Norway too. We like to believe we have diversity, but who is included in this society?

The stinking socialists

The bizarre town hall in Haugesund is a symbol of the elite that makes decisions on our behalf, but they don't always deserve our support.
The bizarre town hall in Haugesund is a symbol of the elite that makes decisions on our behalf, but they don’t always deserve our support.

This post started with a reflexion following a comment the Norwegian Minister of Finance, Siv Jensen, made in a speech a couple of weeks ago. I’m not sure what the context was, but she referred to the main opposition party with a word I’d translate with stinking or damned. Many felt that she used an unnecessarily strong word, even though it doesn’t sound that bad to me. I have no more contempt for socialists that I have for other parties. That is fairly even distributed between the parties, but I asked myself whether the socialists had any reason to feel offended in this case.

Before Jens Stoltenberg became the Secretary General of NATO, he was the Prime Minister of Norway for eight years. He was leading something as unusual as a majority government, but I remember him mostly for the elaborate promises he failed to keep. I’m also reminded of how much easier it is to be in opposition than in position. The socialists are, not surprisingly, strongly against privatization, and they were seemingly justified in their reaction when the biggest newspaper revealed 2-3 years ago that the goverment’s Child Protection Services spent large sums of money on buying services from private institutions. This wasn’t new though, because another newspaper ran a similar story in 2014. The thing is that the enormous increase from NOK 350 million in 2004 to NOK 2,5 billion 10 years later happened mostly under Labour rule.

What worries me the most as we’re approaching another local election is that the socialists have a reputation for caring about the poor, and when we can’t rely on them, what do we have left? I’ve read a number of interviews with the leader of the party in recent years where he claims to be concerned about poverty. He is worried about the development of a subclass, and in one interview he stated that “we cannot live with the challenges many children and young people have today”. He said that when Statistics Norway published a report stating that 101 000 children lived in households with persistently low income. This figure has risen steadily since the beginning of the 2000’s, which means that the socialists couldn’t stop it during their 8 years of majority. I don’t see why they would this time either.

The point isn’t that one party is better than the rest. The point is that this isn’t important enough to any of them. I came across an article in Psychology Today a while back. It explained the distinction between shallow and deep empathy. The first is about seeing the world as another person does, which makes it a cognitive skills. It’s not about good/evil, because according to the psychoogist Paul Gilbert it’s empathy that allows some people to torture others. The torturer can only inflict pain if he knows what’ll hurt the victim. The culprit can see things from the victim’s perspective. Deep empathy is about more than seeing. It’s also about feeling what other people feel.

Politicians have a lot of empathy in the sense that they know what the audience wants to hear, and they know that people quickly forget previously told lies. The reason why politicians can be ruthless is that they don’t have the ability, to the same extent as others, to feel the consequences of what they are doing. I might as well have said the damned Conservative Party or the damned Christian Democratic Party, but I’ll gladly change my mind the day these people choose to seek help for their shortcomings.

I’m tempted to advice politicians to learn from autistics. They feel strongly. Autism is a spectrum where people have different degrees of challenges, but it can generally be difficult to understand, describe and communicate one’s own feelings, and to cope with the feelings of others. They can for example express happiness when their surroundings are happy, and stress when the people around them express more difficult feelings. It’s not my impression that a lack of empathy is a problem at all, so politicians have something to learn.

The journey home

My hometown seen from a WW2 position. It's the planet I wanted to call home, but it wasn't.
My hometown seen from a WW2 position. It’s the planet I wanted to call home, but it wasn’t.

Asberger syndrome is sometimes referred to as Wrong Planet Syndrome, which is a description that makes a lot of sense to me. You can see it in book titles like Raising Martians and Through the Eyes of Aliens, a website like Wrong Planet, and different other internet forums. Many have described feeling uncomfortable when they spend time with people, while others feel that they were born in the wrong time period, or in the wrong city.  In other words, they have to seek out their planet.

I can relate to that experience, but the theory of multiverses is just as relevant to me. I think of it as multiple bubbles where each bubble is a different universe or reality. I entered my teens in 1981, so I definitely spent my adolescence and early adulthood in a pre-internet era. I was still very much aware of what kids in other countries were doing, and as attached as I have always been to my home town (and reluctant to leave it), I always felt that I was in the wrong place. I was fascinated by goth and cosplay from 1980’s. I have been drawn towards science fiction and space since I watched Carl Sagan’s Cosmos in 1980. Watching films like ET and Back to the Future sparked an interest in BMX bikes and skateboards. The problem was that none of this came to my country. That happened much later. That may surprise people today because American popculture is very popular here, and conventions have been around over there since the late 1930’s.

I have written extensively about adapting. I’m not talking about assimilation, about becoming an earthling, and thus wipe out everything that makes us unique, but a certain amount of it may be practical. After all, we’re not going to live on Vulcan or Alderaan, are we?  We have to find happiness here on Earth. To do that I think it’s necessary to stop worrying about what other people think about us. That requires confidence and knowing who you are. If it was easy I’d be a master myself, but I’m not. Our mission should be to try our best and to raise children that do it better. I wanted to find my planet when I was in my teens. My kind of people were out there somewhere, probably at Star Trek and Star Wars conventions and goth festivals in Britain and the USA, but I never found them.

The feeling of not being at home may go back to childhood. My surroundings had other (not necessarily bigger) expectations to me than I could live up to. I couldn’t be what people wanted me to be. I always tried to be a good earthling, but I didn’t do things right. It took a while, but I eventually found my family. I still have some lingering reflections, though.

I think of it as bubbles or parallel universes where different versions of me experienced other things. In one universe I may have come in contact with people from my planet much sooner than I did, and I wonder how that would have affected the things that came later. I had my first job in Stavanger, and although we experienced some racism there, we loved our life in the old section of the city. We moved back to my hometown Haugesund when I lost my job, and four years later we had to move again. We lived four years in West-Telemark, two years in Nordland county, and another four year period in Haugesund. We moved back to Telemark at the end of last year. We haven’t moved around because we wanted to, but because that’s what I had to do to get a job.

We have met many vermin on our journey, but also a few people we miss. I had a friend in college, a colleague in Telemark we also rented a house from, a neighbour in Halsa, Nordland, and a family we got to know in church there. These places turned out to be horrible because people there hated outsiders, but the few good people made life better. Bubbles are fragile and tend to break, but I sometimes think of what would have happened if it had been possible to stay.

It’s hard creating a new bubble, and I don’t do it unless I have to, but I have managed to get something positive out of all of them. It is still a challenge, because no matter how much people claim to have created a society where being different isn’t just possible, but encouraged, the reality is very different. People make everything their business. Norway is a country with a strong norm everyone is expexted to stay within, and you are constantly remined that that’s not how things are done here. The tiny house trend is a good illustration, because in theory you can buy one of these homes, but the moment you decide to move in, you’d face a mountain of regulations you couldn’t possible meet. It would be like dealing with Earth and Vogon bureaucracy at the same time (reference to the Hitchhiker’s Guide to the Galaxy).

I don’t stretch the alien identification as far as some people, but it makes sense to me. People who see the world with different eyes, also see and experience different things. We see interesting things, and if we are courageous, we can become something no one can see in us. That’s the tricky part. That’s what we need confidence for in a world that doesn’t allow for much leeway, or deviation from the norm. Some like to think of themselves as aliens, while others prefer to see themselves as outside the box-kind of people. The point is that life outside mainstream can be quite interesting, and frequently more sustainable.

It has puzzled many people why dystopic stories have dominated young adult fiction for at least a couple of decades. It is disturbing in a way, because if people think there is no escape, they could stop trying. There’s another possibility. They could be seeking likeminded people in the other districts (as in the Hunger Games). In that sense, dystopia could be something positive. It could be the start of the alien invasion.

Find the motivation

he sea on a rainy dag. I liked stopping here when I passed on my way to Bodø. It was beautiful on grey days too. A nice place to reflect.
I liked stopping here when I passed on my way to Bodø. It was beautiful on grey days too. A nice place to reflect.

Do you follow trends? Do you listen to pundits or news anchors with a strong need for us to believe their speculations? It may not be a good idea if you don’t ask yourself some questions. You may be a better judge yourself, unless you are one of those people with a brain that is still fresh and unused after reaching adulthood.

One trend is solitide or introversion. I have some experience with it myself, so on one hand I appreciate this trend, but I also see that it’s bullcrap. Another trend is the insistence that difference/otherness will always be celebrated by the majority culture. The truth is often that you need to be different in a way society approves of, which is a bit (oxy)moronic.

There is a reason a site like Wrong Planet exists, or books like Raising Martians and Through the Eyes of an Alien. Some people are different, and made to feel so, to the extent that they feel like they don’t belong on this planet. That’s why just receiving a diagnosis can make people realise why they have been feeling different all their lives.

The trend has calmed down significantly, but I still come across articles trying to convince readers how beneficial it is to spend long periods alone. The most recent one referred to the study Motivation matters: Development and validation of the motivation for solitude scale. The subjects were asked to grade how relevant some statements concerning solitude were:

It sparks my creativity
I enjoy the quiet
Being alone helps me get in tocuh with my spirituality
It helps me stay in tuch with my feelings
I value the privacy
I feel energized when I spend time by myself
I feel anxious when I’m with others
I feel unfomfortable when I’m with others

The study distinguishes between selfdetermined solitude and non-selfdetermined solitude, and the unsurprising conclusion was that loneliness and depression is lower when you have chosen the solitude yourself. That may be self-evident, but I think some caution is in order before we advice people to seek solitude. Albert Einstein put it like this: “I live in that solitude which is painful in youth, but delicious in the years of maturity.” Many have felt how difficult it is to travel on that path.

It reminds me of a couple of examples from music. There’s a clip available on You tube, which I think is taken from a documentary about John Lennon. It shows a hippie that had been camping on his lawn, and John invited him in. This was more a mansion than a house, and although John Lennon may have written the words a whole generation wanted to hear, they weren’t more than words. John Lennon thought this guy read too much out of the song. The other example is Chris Isaak, and I have some vague memory of watching an interview with him in the 80’s where he talked about a woman who had a similar reaction. His songs, at least back then, could be very melancholic, so much that he couldn’t possibly function if he felt like that all the time.

Many have rather depressing ideas about introversion. I came across an article on a Norwegian science site. This one was produced and financed by a university, and it referred to introversion as a behavioural problem. It can be, but there are silent people among us that don’t need to be lured out of their shell, as this article put it. It’s never that easy. Some may wish that they functioned better socially, while others have social needs, but not necessarily in the way people expect.

These studies may help people find a motivation too, because if becoming social in the way society expects is not an option, one could find a new motivation in solitude. A person that wasn’t that interested in reading may find pleasure in that, and someone that hadn’t spent much time in nature, may find that forests and mountains has a lot of experiences to offer. Boardgame clubs are a good option because the games are fun and you are likely to encounter people with the same challenges and interests you have. No, I’m not talking about the old traditional family games, but games based on fantasy, science fiction and Horror. Some places have archeology clubs, astronomy clubs, or ornitological societies, and I think you’ll find that there are differrent definitions for being social.

This is connected to passion. It’s not very helpful to advice people to follow their passion or dream. They need to find and develop it first, and that’s the kind of help young people need. That’s what they don’t get. The pun was unintentional, but I see it now. No one gets it.

Push them

I am sometimes amazed at what’s going on around me, and I wonder if everyone has gone bananas. There seems to be a focus on promoting a single lifestyle for starters. I googled the topic and these are a few of the early results: Why many people are just as happy being single, 17 surprising reasons single people are happier and healthier, Four reasons to stay single, Are you single? Here are all the ways it can improve your life, 101 reasons to stay single, and as if that wasn’t enough, the following headline showed up on Facebook today: Does marriage really make people happier?

I’ve read a few blogs and listenned to podcasts about introverts aiming to sell this lifestyle to others. I find both lifestyles to be healthy, but the idea that we are to learn it may be a little strange. Livestrong has looked at the benefits in the article 10 reasons to embrace being single. They mention advantages like freedom to find ourselves, time and energy to better the world, better sleep, and an easier time staying fit. There are some positive aspects, but I’m not sure how many choose staying single because they want to devote themselves to a selfless lifestyle. The most extreme society I know about is South Korea, where the fertility rate is 0,98 child per woman, and in a country with no immigration it needs to be 2,1 to maintain a stable population.

I’ve seen a few cases of pretty hard criticism of Temple Grandin. She’s a writer, scientist, and an activist that has probably done more good within the autism field than any other. One of her messages has been to encourage children to get new experiences, to help them out of their comfort zone. You can read about that in her book The Loving Push. I totally agree, but this is not in accordance with popular philosophy at all.

I have written extensively about it myself, and there is a scientific justification for it. The consequence of getting new experiences, something the brain has never had to deal with, could be that the amount of both white and grey matter in the brain increases. When I hear and read about neurodivergence or neurodiversity I wonder how much we encourage kids to reach just a little bit farther. It’s easy to think that for example a boy who feels more comfortable playing computer games in his bedroom, should be allowed to continue doing that. The problem with that is that he won’t be better equipped at dealing with life outside the house.

I often hear people say that we can use our special interests for a future job, but if you don’t have the skills others are willing to pay for, and if you can’t meet the lowest possible requirements for social interaction at work, you won’t go far. I used to work as a teacher, and I saw a few pupils with ADHD and Asberger syndrome go down a track that didn’t lead anywhere. Temple Grandin talks about a childhood where she wasn’t allowed to permanently withdraw from her family. Her mother gave her choices, like the time in her teens when she could choose to stay one week at her aunt’s farm in Arizona, or the whole summer. That was a big decision, as Temple Grandin grew up in Boston, but she liked it so much she stayed the whole summer.

That summer probably had a lot to do with her career choice, animal science. New experiences is really about getting to that distant destination called independence. None of us are born ready, and some need more help to get there. None of us are harmed by a gentle push. I’m reminded of an experience I had in 1984. I started high school that year, but didn’t have the grades to get into one in my hometown. I was admitted at one in a place 3 hours away by bus. My parents drove me there, and I was excited about living on my own for the first time at the age of 16. I was very sad as they were leaving, and I desperately wanted to drive back with them, but I’m glad I stayed. I can’t deny the fact that I faced a lot of adversity in school, but I’m glad I didn’t give up. I don’t think I would have completed high school if I had dropped out that first year.

We all need a bit of a push to help us stretch a little farther.