Outsiders connect across the ocean

I didn’t have a lot of friends as a teenager and young adult. Contrary to what some people seem to think children with a diagnose like NLD or ASD don’t choose to be alone. It was more that everyone else made that decision for me. Science fiction, Sherlock Holmes, Charles Dickens, music and films/TV-series like Fame, Anne of Green Gables, Foxes, The Breakfast Club, The Outsiders, Star Trek and Star Wars became my favourite escape. I didn’t reflect on it at the time, but I seem to have been attracted to outsiders. That’s what many of these characters had in common.

I also liked writing letters. In fact, that was my English teacher. Grades have been a constant topic of debate in Norway because we don’t have them in elementary school, so politicians debate whether or not it would be a good idea to introduce more competition sooner. I spent the first six years in school not getting grades, and seventh grade was a huge shock. I hadn’t done any homework for six years, and not surpringly I failed a subject and was close to failing the rest. I worked hard the next two years, but continued to struggle in high school and college. I suspect I have some learning difficulties that have never been diagnosed, because learning has always been hard work. I probably spent more time studying than anyone else, but that was not reflected in my exam results.

I learned English by writing letters. I guess it felt like there was a purpose to it when I could use it for something. The end result wasn’t perfect, but still pretty good. I don’t speak the language as well as I write it, which I suppose is to be expected. I had pen pals from about the age of 14 and these pre-internet friends came from all over Europe, as well as Ghana, South-Africa, Japan, Malaysia, Australia, Palestine, the USA and Canada. The last one I had was also the most interesting, which could be because we were both in our late 20’s then. Many of the early pen pals were characterless, and I got tired of working hard to make my letters interesting, while the responses were frequently scribbled down in a hurry. What I thought was friendship of some sort clearly meant less to them than it did to me. I occasionally found someone that actually had something to offer. I learned something from them, which I think is a rather nice side effect of friendship. A guy from Ghana sent me a cassette with pop music from his country, which was very interesting. I am not being diplomatic. I received some fascinating impulses early, before most kids listened to African music. Sally from Fredericton in New Brunswick, Canada was the most interesting, and the only one I occasionally think about.

I believe she fascinated me because, like many of my fictional means of escape, she was an outsider. I am sorry to say that I have lost all the letters and the very nice tourist brochure she sent me. I read it over and over again, and probably knew more about her home town than anyone that had never even visited Canada. I believe I have lived in 14 apartments since 1996, and things tend to disappear each time I move.

I haven’t thought about Sally in quite some time now, but the memories came back because I wrote about another Canadian, Abby Bell, on my Norwegian blog yesterday. She talked about NLD in a video on understood.org. Watch it on You tube. I might write a post about what I think about that video. I  think Sally was a continuation of a long fascination I have had with Canada, and outsiders. I grew up with Canadian music and TV-series, as well as authors like Margaret Atwood and Lucy Maud Montgomery. I always paid special attention when Canada was mentioned on TV.

America has a special ring to Norwegians, and America is of course the USA. It couldn’t be any other country on the continent. We have a strong connection to the USA because around a million of us moved there during a hundred year period. Canada was still the one for me. She was the adventure I never had. So when I from time to time think about Sally I think mostly about The Great White North, and Lucy (and Prince Edward Island) and Margaret, and of course Leonard Cohen, Michael Bublé, Joni Mitchell. Sally interested me. She had bipolar disorder, and although this was years before I was diagnosed with NLD, I knew what it was like to be different, to be seen as different.

The soap bubble is one of my favourite symbols. It represents hopes and dreams, a rare moment of magic, but also reminds me that life can be fragile. They are also the memories I put in my pensive.
The soap bubble is one of my favourite symbols. It represents hopes and dreams, a rare moment of magic, but also reminds me that life can be fragile. They are also the memories I put in my pensive.

I suppose everyone has encountered people they later wondered what happened to. I would be lying if I said that I thought about Sally a lot, but she comes back to me from time to time. I also had a friend in my hometown. Siw was a neighbour that had been abandoned as a baby in Korea, and adopted to Norway. I met her from time to time later in life, and we exchanged greetings. Years later I heard that she had killed herself. I wonder what happened, what had made her life unbearable. I wonder what happens after we die. I hope, more than I know, that there is something better. I think many deserve better than they get.

I sometimes think that some of the people in my life, either I have met them or just communicated through letters, live on while I am alive. Everyone they have ever encountered hold a little memory, and a small part of their experiences are stored in my brain. It’s like the pensieve from Harry Potter. My wife is from Little Rock, Arkansas and definitely qualifies as an outsider, in an above the average and interesting kind of way. I don’t think I could have been married for 16 years to some conventional, inside a small box kind of person. She naturally takes up most of my pensieve, but a tiny part of it belongs to a friend from Canada I never met. She is a good memory from a time when I didn’t have a lot of them.

Advertisements

Darwin and autism

A children's book about Darwin and his little theory. Autism may be vital to mankind, but maybe we are seeing an excess of it now
A children’s book about Darwin and his little theory. Autism may be vital to mankind, but maybe we are seeing an excess of it now

I frequently revisit topics, and neurodiversity seems to be an especially hard one to avoid. I haven’t read it myself, but from the information I have come across I partly agree with the book Genius Genes: How Asberger Talents Changed The World. The authors use examples like Nicola Tesla, Albert Einstein, Isaac Newton, Thomas Jefferson, H.G. Wells and Charles Lindbergh. These people lived long before autism was a diagnose, but the hypothesis is that their “autistic minds” changed the world.

I find some of the examples questionable. They may have had some traits, but even today that’s not enough. There are many people today that don’t get a diagnose because the psychologist determined that they missed one or several traits. Some people have a special interest, but because they don’t talk to everyone about it the psychologist may decide it can’t be Asberger syndrom. I remember a test that was included in a Tony Atwood book that separated between reading for pleasure (for example science fiction) and reading facts, such as an encyclopedia. In my view that is far too simplistic. There are also some that lose a diagnose during childood. PDD-NOS could be changed to ADHD, which conveniently can be treated with a pill.

Being diagnosed as an adult is harder. There is probably a requirement then that the difficulties must have been an obstacle in work and education, and giving it to adults is also an admission that they allowed this individual to slip through the cracks as a child. Many high-functioning autistic adult without an intellectual disability are more likely to be unemployed than autistic with an intellectual disability. That could suggest that high-functioning or not, this is a group of people that may need more support than society has been willing to give. I question how tolerant society is and how much it is willing to help people that appear to be intelligent, sometimes above the average level.

Isaac Newton may have received a diagnose today because he seems to have had difficulties interacting with people, while the others on the list probably wouldn’t have  had enough traits. Most people are familiar with Charles Darwin’s theory of evolution. It’s the fittest, or the most adaptable, that survive. That usually implies that traits survive because they are advantageous. They represent something mankind needs. So why do we still have autism, and why does it seem to grow? Does that mean that darwinism is no longer valid?

I believe society still uses this theory, so much in fact that it predicts our behaviour. Many studies and scientific articles have tried to explain why autism is more prevalent even though that goes against the only accepted scientific theory. A British/Swedish study concluded that the culprits are mutations and unknown mechanisms. One of the researchers on the project said in an interview that it could be that other family members compensated by having more children.

The study also looked at other diagnoses, such as schizophrenia, and there may be support for the compensation hypothesis regarding this disorder, but not autism. The study says that both men and women on the spectrum have less children compared to the rest of the population. Their brothers have less children as well, while sisters have about the same as the general population. I would think that this is quite common because if it’s clear that one family has a high genetic risk, people are more likely to think long and hard about whether or not they should have children.

I’m not going to debate why autism is on the rise, but it appears to me that there could be other explanations, such as diet, pollution and medicine (all of which can damage mitochondria). In a darwinist way of thinking diagnoses like autism and nonverbal learning disorder should have slowly disappeared. Many with these diagnoses don’t succeed on the job market. They may be succesful as a university student, but still be without a job for years. In other words, it doesn’t look like an advantage, so what are these twins still doing here?

It could be that society is thinking survival of the fittest, and autistic people may not look fit to them. Maybe autistic people simply aren’t welcome? Autism seems to have always been with us, and the reason it never went away could suggest that mankind needs autism. Maybe we need these traits to produce geniuses? I still think there is a tendency to exaggerate the genius gene. There are some families that seem to have the genes or inclination, so you could see many scientists and engineers from the same family.

What we are seeing today could be a tipping point where there are more autistic people than we need. The rate of autism seem to be high, but we may produce fewer geniuses. We may, as a species, need autism to produce geniuses. That could be why evolution saw the value in what today’s society doesn’t at the moment.

The solution isn’t go get rid of autism, but figure out how to find the balance. Is it something about modern life that is harmful to our genes? Of course there is, but you can’t tell a scientist that because they like to pretend that they never walk faster than the evidence allows them. That’s why pharmaceutical companies have so high ethical standards. Many people today say that they are very tolerant and that being different is good for society. It makes our culture diverse and strong, but these including attitudes seem to vanish when there is a question about committing to any kind of help. That means money, which quickly makes you a burden. Then we quickly switch to a darwinistic mind set.

The solution isn’t to eliminate autism through genetic testing, much the way Iceland has eliminated Down syndrom. I do think it would be good to stop the growth, and to develop better treatment/tools for teaching the skills we need to succeed. That would give more people a chance, and I don’t see how that would be a disadvantage to the whole society. In fact, we might get more geniuses as well as better teamplayers.

Fecundity of Patients With Schizophrenia, Autism, Bipolar Disorder, Depression, Anorexia Nervosa, or Substance Abuse vs Their Unaffected Siblings.

Interview with Doctor Peter McGuffin of King’s College

Different in the wrong places

Grafitti text alone. Nice grafitti by my old junior high school. It's a feeling many with ASD/NLD are familiar with.
Nice grafitti by my old junior high school. It’s a feeling many with ASD/NLD are familiar with.

There has been a lot of focus on different in recent years. Being different is a good thing according to the neurodiversity camp. Is it really? I am not sure I have seen any of this respect. I almost get the impression that young people with a developmental disorder don’t have to prepare for a life among neurotypicals. It’s everyone else that has to make room for us so that we can express our autistic personality without any inhibitions. Children and teenagers growing up thinking that’s what they’ll encounter in the workplace may very well be a little perplexed.

I agree that children with a diagnose like ASD or NLD are amazing. They deserve to be told that they are special, and then I mean special in the best possible meaning. Do you think all kids experience that? It’s not a good thing that many are forced to struggle more than necessary, and I suspect that to many the attitude they encounter becomes another comorbid condition. Yes, family could also be a part of the problem, and preparing children for a world that doesn’t exist is both madness and evil.

In a perfect world there wouldn’t be a difference between people with a disorder and people without one. It would have been wonderful if it didn’t matter whether you were a little different or a lot different. Sadly we live in a world where the differences mean a lot. Having ASD or NLD, no matter how high-functioning you are is the only reason some people need to bully, discriminate and harass. There is a growing acceptance of different sexual orientations, but if you think that it’s an indication of a general acceptance, you are going to be disappointed. Being different, being original isn’t always a good thing. Like I said in the first paragraph, I don’t see a lot of respect, and I am not convinced that living with ASD, NLD, ADHD or other diagnoses is any easier today than it was in the past. There is a limit to how different you can be, to how close people are willing to allow different to come.

My attitude to neurodiversity is that children would have easier lives if they learned to adapt. That doesn’t mean they have to become someone or something they are not, or to erase themselves. I still don’t think it’s going to help them if we tell them during their upbringing that the world is going to love them. That reminds me too much about families that tell their children how wonderful voices they have, while the humiliating truth will be known live on Idol or a similar show.

NLD is called an invisible disability. That’s because we have a so-called uneven ability profile. We can be strong in some areas, but if outsiders judge us by our strong sides, they are going to be disappointed when we fail to deliver the same quality on other areas. You can imagine how many chances you’ll get if the first impression is from one of your weak sides. I am one of those that is more. I believe I have a greater potential than most people realize. Many of us are more.

It sometimes feels like it’s acceptable to be different as long as you are different in the correct places, and if you have the wrong kind of different you belong to a world most people don’t want to interact with. That world feels alien to the them, and they don’t like that feeling at all. That doesn’t sound entirely inclusive, does it? How different are we allowed to be?

Theory of mind and loss

candle at my fathers grave

Theory of mind is used to explain the ability to understand other people’s thoughts and feelings, or seeings things from their perspective. These facts aren’t easily available to us when we don’t have written or oral information, so how do we determine what other people think, feel and know? This information is used to anticipate how people are going to act, and without it you have a disadvantage.

It’s interesting that when Bowler used the Sally Ann test on grown subjects in 1992 they did much better than on Baron Cohen’s original study in 1985. He studied children while the average age in the 2nd study was 26,9 years. I suspect all children have some difficulties reading other people, but these two examples may suggest that some on the spectrum learn. They may need more time to develop this skill, though. This you tube-video explains the Sally Ann test.

I may be in that category myself. I live in a country that is strongly influenced by Christianity, but we have as a society a strong aversion to our own culture, almost to the point of self-loathing. We also seem to be very set on protecting our way of life when the truth is that Norwegian culture is a wonderful mix of a thousand year of outside impulses. Halloween/Samhain is a reminder of that because it’s almost exactly like a Norwegian Christmas. I used to think that it was a bit weird to cling to these traditions, both Christian and pagan, and at the same time insist that we didn’t need any religious influence.

I also thought it was strange to put flowers on graves if you didn’t care. There is a service you can pay for in my town where people maintain a grave for you. I used to think that the flowers were meant for the living. It was too late to give them to the dead, and as comforting as it may be to think of spirits wandering for centuries, I don’t think that person is there anymore. Halloween, and my daughter, made me slowly think differently about death. It’s hard to talk about, so many avoid it.

My father died in 1979, my step-father in 1996 and my father-in-law in 2001. I was eleven years and four months old when my father died, and my daughter reached the same age exactly a year ago. She never got to meet any of her grandfathers, but she has asked questions and made some remarks about them over the years, particularly about my own father. These are questions no one can answer satisfactorily. Where is grandfather, what is he doing now, can we visit him, can we bring a cake? I have never felt comfortable with the belief that death is final, that everything my father was at his best is lost forever, that I am never going to see him again, that I saw parts of him I wished the world had seen and that these memories will be gone when I am. Abstract thinking is hard to children, but to some it could be a lifelong challenge.

It’s been so long since my father died I can’t remember what I thought, but I think I was puzzled by the gap between words and action. I grew up in a Christian family where death was a gift, a reward. It was the lifelong goal and death meant you had come home. It was an achievement if you had stayed on the right path. Of course their actions said something else because grief is very dramatic. It isn’t easy accepting the Christian message without any kind of doubt. Death is the unknown, or as Shakespeare put it, “the undiscovered country from which no visitor returns.”

I am still trying to make sense of it, and some may think I am still creating delusions, but I think of a barrier between Heaven and Earth today. That’s something I can live with as an explanation for why we never see the people wee miss. I don’t know if I will ever see my father again, but it is comforting thinking that it might happen. I am not confident enough to know it will happen, but I hope. I believe it’s good to talk about these things, and animals might be a good starting point. Most children have seen pets, wild birds and insects that have died. I don’t think it’s a good idea to say that grandfather is sleeping or that he had to go away for a while. That might lead the child to thinking he could come back, or that someone else won’t wake up from a natural sleep.

Now I finally arrive at the point of this post. 31.10-2.11 is an excellent opportunity to think about the dead. These days are called Halloween, All Saints Day, All Souls Day, and Day of the Dead. It doesn’t have to be as morbid as many seem to think it is. Modern people may have lost something vital when we don’t deal with death, and we don’t have the festivals that reflect nature’s rhythm. We are in the darkest time of the year, and some light wouldn’t do us any harm.

Like my daughter I have some questions for my father, and I wonder what he would have thought of me and my family. He lived in a time when there was no help at all. Many people don’t see me as successful, but I disagree. I still wonder if I am more than he was, closer to what he wanted to be. I’d like to think I have made a difference in the Ytreland line. These days in late October and early November are not at all gloomy to me. It is a time of light, of hope. It’s a time for reflection and diving into the pensieve (Harry Potter). I’m closing with a nice video of the Mexican Day of the Dead. This girl remembers her mother:

These are just reflections, something I enjoy doing. It feels silly and totally unnecessary, to add a disclaimer, but I have been accused in the past of being depressed. Even if it had been true that is a very serious label to put on people. It is an indication of a society in serious denial when talking about life stigmatizes you. I wrote a post once where I used the image of the wrong side of a knitted sweater, which is the same as Disney’s Inside Out. The wrong side is what we don’t want other people to see, that’s where what makes us different lies. It’s just a little observation or sigh, but I find it just a little confusing that many are eager to accept just about anything in the name of tolerance, but not reflections about what makes life a challenge.

Autism and eugenics

Books with a note saying #IamABLE. This little corner of our living room shows one of my victories.
This little corner of our living room shows one of my victories.

I have a Norwegian blog where I write first and foremost about autism spectrum disorders (ASD), nonverbal learning disorder (NLD), ADHD and some of the comorbid disorders that may follow. I sometimes write about topics that are not directly about these disorders, but they are still relevant.

This is a post where I sum up some of the things that have been on my mind lately. There is phrase in ethics called sorting society. It means that there are certain conditions individuals or the society doesn’t want, which is relevant when we debate abortion. Aksel Braanen Sterri has been a very controversial participant in the public debate in Norway. This political scientist, now Phd student in philosophy, said in an interview that people with Downs will never be able to live full lives, no matter how much we as a society try to make that happen. He also said that he was willing to let embryos with poor prerequisites for living good lives be eliminated, and that included embryos with a risk of developing mental illness.

I always try to remain objective and keep personal feelings to myself. That is the ideal everyone should strive for in a debate, but that is impossible when Sterri’s reasoning concerns all of us. What does it mean, by the way, to live a full life? There are some milestones most people hope to achieve during a relatively short period as young adults. Getting married or moving in with a partner, owning a house, getting a permanent job, and having children are on many people’s list. Does it mean that you are not a grown up if you fail to accomplish these things, or that your life is less than full? There are undoubtedly some people that will never be able to do the things other people can do, while some will do quite a bit with some help. Are you less human, are you worth less if society has to spend resources on you? Some would clearly say yes.

Where do you draw the line for what is acceptable and what isn’t? Some may argue that blind, deaf, people with developmental and motor disorders can not have a full life. I am sure there are many of these people that are not sorry they were born. The theologian John Hull’s vision deteriorated over several decades and he eventually went completely blind. He decided the only alternative to understanding the blindness was to be destroyed by it, and the result was the book and documentary film Notes on Blindness. The film is available on Netflix (in Norway at least). Imagine that a test in the future can predict that the child will have a big risk of going blind 30 year later. It has to be hard to accept when it happens, but I find it hard to believe that life no longer has any meaning. I believe society can make life worth living for everyone. Watch a trailer on the project’s homepage.

What about schizophrenia, personality disorders (such as avoidant), anxiety, epilepsy, ADHD, or Tourette’s syndrom? Do they live full enough to meet this criteria? I grew up in a low rise where both parents and a child in one family were deaf, but it didn’t appear that they enjoyed life less than I did. I read in the paper today about deaf and blind José Richard from Bogotá in Colombia. He has Usher Syndrome, which affects hearing and vision, but he loves to go to football matches together with an interpreter. Read about it in Daily Mail.

This is personal to me because there are those that see ASD and NLD as mental disorders, which ICD and DSM also support. I am strongly opposed to that view, and it should worry all of us when people start talking about costs. I spent most of my years in school with teachers that assumed I was either stupid of lazy, and I was 42 years when I was diagnosed. My story isn’t uncommon at all, but in a society that may move towards eugenics anything could be targeted. Neurodiversity is a nice thought, but contrary to what many believe being different isn’t automatically seen as a proficiency when you apply for a job.

The Guardian wrote about a study from The London School of Economics three years ago that said that autism costs more than cancer, strokes and heart disease. The reason many don’t get a job is that families don’t get help, and in quite a few cases parents are opposed as well. I would be more interested in studies showing that intervention works, which will be the topic for my next post.

P.S. I used the same illustration as I did for my previous post, I celebrate big and small victories. That’s where the focus should be.

Cost of autism more than cancer, strokes and heart disease

I celebrate big and small victories

Books with a note saying #IamABLE. This little corner of our living room shows one of my victories.
This little corner of our living room shows one of my victories.

It may not be a very original idea, but organizations that want to get some attention choose a day, week or month where they focus on a single issue. You may remember the biggest mainstream success, the ice bucket challenge. April is autism awareness month, while April 2nd is world autism awareness day. The organization Talk About Curing Autism (TACA) has jeans day for autism.

It’s hard to get the message out, to develop the awareness you want the majority of the population to have, so it’s not surprising that these days don’t really reach far beyond the inner circle. We don’t need more days in the myriad of days, but I like the positive message in #IamABLE. DM Thomas Foundation for Young People celebrated the youth on September 19th. They celebrated people that had reached their goals, overcome hurdles (conditions), learned to live independent lives, or people that have expanded their horizon. In short, people that can do something they couldn’t before.

This celebration is a lot more general than EveryWoman day, Alzheimer’s day, Aosmia day (loss of the sense of smell) etc. The list of causes with a day include World Hijab Day, Pig Day, and World UFO Day. Yes, these days involve what you probably expect. World Hijab Day encourages women of all religions to wear a hijab, while Pig Day celebrates the pig as one of our most domesticated and intellectual animals. I have been fascinated by science fiction and astronomy since childhood, and I can understand the joy many feel on May 4th (Star Wars Day), May 25th (Towel Day to celebrate Douglas Adams) and July 2nd (World UFO Day), but when I consider the challenges many face today, some of these days seem quite trivial, and frankly a little creepy.

Girls may choose to lose their hijab, but they can’t choose to lose autism, NLD or ADHD. I have encountered that attitude myself. I just needed to be like everyone else during the job interview, but of course that didn’t help me later. There have been times when I wished I could have redefined or transformed myself into something more people could live with, but that is very hard without help from an early age. I have even met special education teachers who stated that a student they liked couldn’t have a diagnose precisely because he/she was so likable in small groups. In other words, if someone doesn’t like you, you are out of luck.

I have achieved many big and small milestones. It may not seem much to other people, but reading and writing are major victories for me. I struggled with both during all my years in school, and although I got to be pretty good at it, I still need a lot more time than most people. Many authors have said something about books being magic, and they really are. Books have made my life much better, and as grandiose as it may sound, my ultimate goal would be to create some stories that could follow other people for years. I wouldn’t mind being a Madeleine L’Engle, C.S. Lewis, or J. K. Rowling to someone else. Yes, why not dream big.

Read the #IamABLE campaign 2017

Autism as entertainment

Drama series on TV usually don’t say that a character has an autism spectrum disorder. I guess that’s because the creators want as many people as possible to identify with the characters. Besides, they usually get it wrong, so there will be a lot of criticism. There are still some fictional characters people on the spectrum find familiar.

One of my early characters was Bruno Martelli from Fame. I also liked Spock, Odo and Data from Star Trek, Anne of Green Gables, Sherlock Holmes, Gil Grissom from CSI, The Fabulous Amélie from Montmartre, When Marnie Was There by Joan Robinson, The Borrowers by Mary Norton, and Spencer Reid from Criminal Minds. These characters didn’t necessarily have autism, but they had some feature I believe many with autism and NLD can recognize in themselves.

Autism and especially Asberger’s syndrome has become a fashion now. Everyone claims that being different is a good thing, but I have a feeling that reality is a lot less romantic. I think Sir Arthur Conan Doyle wrote some brilliant books, but I am not a big fan of the series Sherlock. The modern adaptation Elementary is better. Series like Bones, The Bridge, and The Big Bang Theory are almost caricatures. I wish the people writing these series could think more about the influence they have on the audience. I’d like to be super smart like Spencer, or to captivate an audience with a monologue about my special interest, but I can not live up to that kind of expectations.

I haven’t seen any real good examples for grown ups, but Sesame Street did a pretty good job.

Julia doesn’t like paint on her fingers and loud noises (senses), she is so focused on what she is doing that her friends may need to ask a question several times. She likes doing things differently, and she talks less than other kids. Big birds’ response shows that autism can be confusing to outsiders, but with some understanding friendship is possible. Sesame Street wants to create attitudes that will prevent bullying, and they have clearly had this in mind when they developed Julia. There is a lesson to learn from this because fictional characters with a diagnose can be entertaining without crossing the line.