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

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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.

Fictional autism

I have learned a lot about people from fiction, both books and drama on TV. I grew up with science fiction and fantasy, as well as authors like Jack London, Charles Dickens, Henrik Ibsen, and Jane Austen. These people had a lot to say about human behaviour and about how we ought to behave towards others. That’s where psychology truly belongs, but there are limits to how far you can go.

I am sometimes irritated at the urge some people have to hand out psychiatric diagnoses to everyone from Calvin in Calvin and Hobbes to Charles Dickens’ many amazing characters. This happens because we sometimes read too much out of what the author has shared with us readers. I am for example pretty sure that Gabrielle-Suzanne Barbot de Villeneuve did not think of schizoid personality disorder when she created Belle from Beauty and the Beast, or that Charles Schulz thought about avoidant personality disorder when he created Charlie Brown from the Peanuts, but I have seen them on lists of fictional characters with a psychiatric diagnose.

Sherlock Holmes and John Watson have been among my biggest heroes since my childhood. It was reassuring knowing that some was smarter than the criminals.
Sherlock Holmes and John Watson have been among my biggest heroes since my childhood.
Photo: Wikimedia Commons

Sir Arthur Conan Doyle never gave Sherlock Holmes a diagnose, maybe for the simple reason that Asberger’s syndrome did not exist at the time. It is not really interesting what people think today, but I still believe it is helpful for people on the autism spectrum to identify with fictional heroes. I think some tend to exaggerate this, but I see the advantages too. It can be useful to refer to cases without talking about real people. That can help outsiders understand how it is living with a diagnose, and help people with a diagnose understand themselves better.

Sherlock Holmes, portrayed by Benedict Cumberbatch, presented himself as a high-functioning sociopath, but most of the analyzes I have read by psychologists online reject this diagnose. Asberger is a more fitting conclusion. There are some characters in Star Trek I feel a certain connection to, even though they don’t have a diagnose either. I still see some of myself in them. I know that a few aspies like a character like Temperance Brennan from the crime series Bones and Saga Norén from the Swedish-Danish series The Bridge, but many of these drama series have a tendency to present a stereotypical view of autism.

I understand people who warn against reading too much into fictional characters. A book review in The Guardian has a point when it warns against reading Jane Austen’s Pride and Prejudice with modern psychology eyes. Jane Austen describes Mr. Darcy as proud, and he uses every opportunity to show how much he detests people he believes to be below him. This book suggested that silence, social insecurity, apparent selfishness, and thoughtless behaviour are features that can refer to autism. These are autism stereotypes, which is why amateurs should not interfere. It is interesting that many authors described the behaviour we know as autism long before Leo Skinner and Hans Asberger did in the 1940’s. It indicates that these features have been known before science showed an interest, and in the case of Sir Arthur Conan Doyle I think it was a positive description.

Obscur science

I browsed a popular science magazine many years ago while I was waiting for my turn at a dentist’s office. The article I read was about tomato sauce, specifcally why it could so hot on a pizza. I can’t remember what they proposed to do about the problem, but I what stuck in my mind was that this didn’t seem like a very relevant problem.

Over the years I have read about many studies that I think was a waste of money. There are many studies saying that if children spend hours in front of the TV, computer, different game consoles, they have less time to do homework. Isn’t that pretty obvious? Two researchers at Wayne State University and Auburn University wanted to find out whether there was a link between country music and suicides in urban areas. They concluded, not surprisingly, that the themes country music tend to focus on could affect people that are already at risk. I am not sure that blues or metal bands like Metallica are very uplifting either, so why spend money on this research? The University of Mexico wanted to find out whether strippers received more tips when they were ovulating, and apparantly they did. Another study concluded that rats prefer silence from music, but Beethoven is better than Miles Davis. Why is that relevant?

An interesting article on The National Library of Medicine debate 30 years of research on treatment of tardive dyskinesia. This is a side effect, in the form of involuntary movements in the face and mouth, which can occur after taking medicines for schizophrenia and other serious mental disorders. They found 500 studies and 90 suggested therapies, but 30 years of research had not produced anything useful. That wasn’t because there was no solution to the problem, but because the research was bad. The studies were too small or the treatment was terminated too quickly. The same research group went through 2 000 studies on schizophrenia with the same result. The craftmanship can only be described as crappy.

We may smile when we hear about the studies I mentioned in this post, but this is serious. There is a lot of money invested in research we don’t need, while better studies don’t get funding. Do you remember the Ice Buckett Challenge? That was commendable, but it shouldn’t have been necessary to beg for money.

Science lies

I have neglected this blog for two months because I wasn’t getting any traffic anyway, but I have decided to give it another go. I have some mixed emotions about this post even before I start writing. That’s because I like science, but it is irritating to observe how flawed it is.

I don’t like cheating, but we are not doing anyone any favours by neglecting to discuss meta science. I quoted an article from National Geographic a while back. The headline was a question I think many of a different kind of skeptics have asked themlselves: Why do many reasonable people doubt science?
There are many answers and one of them could simply be that too many people have relied too much on science as the truth, the whole truth and nothing but the truth. According to this view there are no hasty conclusions, corruption and publication bias in science. That’s precidely why we have science, to avoid that.

A study from 2005 claimed that most studies get ot wrong. Another study aimed to prove John Ioannidi wrong, but if I understand the criticism correctly it is invalid. The study Most published research findings are false – But a little replication goes a long way. The researchers behind that study claimed that if another study confirmed the findings, the likelihood of the results being correct were high. That’s an important principle in science, but this is where the problem lies. A study tried to replicate 100 studies in psychoogy, but could only confirm 47 of them. Read about it in Science. An article from BBC report on a similar problem in cancer research. The reproducibility from the University of Virginia tried to reproduce the reults from five major cancer studies, but they could only confirm the findings in two of them. The result in two of the studies were inadequate, while they didn’t get any of the same results in the fith study. Read more on BBC.

This doesn’t mean that science deliberately lies, but that happens too. We need science because we wouldn’t get anywhere without it, but it’s not a substitution for religion. Science is not infallible, and in addition to the flawed people conducting it, science is speculation and hypotheses. It’s important to ask questions, but too many research things they don’t know anything about. The result isn’t to cut out all research, but cut out a lot. Competition is important, but the focus shouldn’t be exclusively profit.

Why most published research findings are false

Do you want to write about it?

It’s useful to be able to translate known words and phrases without having to memorize something new, but a few are always tricky. That can lead to some rather amusing misunderstandings, and I frequently detect bad translations when I look at subtitles on TV.

I talked a lot as a child, and the fact that I stopped doing it is the main reason I am not an aspie. The psychologist at the hospital that tested me admitted that I had many of the Asberger traits, but as I didn’t talk to “God and every man” about my special interests I could not have Asberger syndrom. I call that checklist diagnosing, but I didn’t argue with him. I think it’s a shame because having the unofficial and much less recognized diagnose NLD isn’t always a lot of help. I don’t collect diagnoses, so it doesn’t really bother me, but it leaves me somewhere in between. I am officially Asberger’s unknown cousin NLD, but unofficially I feel that the relationship is closer.

But I digress. My point was the expression “talk like a waterfall.” I am not sure that works in English, but that’s one of the Norwegian expression for a very talkative person. It gives me all sorts of associations, some rather disagreeable, so I assume it wouldn’t be correct English. Now I finally arrive at my point. I’m a writer, not a talker these days. Perhaps I write like a waterfall? The words are flowing with a lot of force and they leave you …eh wet, cold and uncomfortable? Hm… That’s not exactly the image I was looking for. What about electrified? Maybe too bold.

I love writing, which is why I continue writing posts that no one reads. This blog is sort of the family holiday photos that you think your friends will be interested in, but why would they when they could never feel the way you did when you experienced it? Writing is still fun. Something strange happens when I write. I think when I write and that’s how I develop ideas. Just sitting down to think is less effective. It’s not a strategy I recomend because it was a bloody nuisance (another expressions with interesting images) in college. Professors wanted me to write a disposition (thesis outline) before I started writing the paper, but I sort of developed that along the way. That’s a much more interesting way of working, but not exactly less time consuming, and that is the problem in any job. You don’t have much time.

There were lots of things I didn’t know or understand about me. I didn’t have the disposition I needed to write accurately from the beginning. That came later, but I should have been better at deciding what was appropriate to publish. Writing is good, but there are things you shouldn’t publish. Many people don’t know anything about depression and anxiety for example. We have a word in Norwegian that doesn’t sound that bad, but it is more serious when it’s translated into English. Vemod is often translated with mournful or sadness, and it can be that too, but I like nostalgia better. It’s a feeling you get when thinking back on a good memory and you know it will never come back. That’s sad, but not I have no reason to live-kind of sad.

So when I expressed this kind of sadness and tried to uncover things I knew influenced my thoughts, some people assumed I was depressed. They revealed a further lack of understanding when they assumed that a sad man couldn’t be a good father. There are sufficient studies to prove that mentally ill parents don’t transfer these symptoms to their children. Instability is bad for children. They want the same stable life their friends have, and it doesn’t matter what causes the instability. Healthy parents that argue all the time are more likely to do harm. This is important to remember as half the population in my country get a mental disorder one time during their lives.

The thoughts and memories I tried to untangle were invisible to me, and I think of them as dark matter. Not beause they are especially dark in nature, but because there are invisible or unknown things that can explain thoughts and behaviour. Most of the universe is made up of dark matter. It can’t be seen, but scientists know there is something there because it influences the parts of the universe they can observe. So when someone gets sad or angry, and you don’t understand what caused it, there could be something you are not seeing. Many people have dark matter, which means it doesn’t last long enough to qualify as depression, but it could still explain a lot of things.

Stuffed pokemons on my keyboard. I like complete silence when I write, but these dead quirky creatures are welcome company.
I like complete silence when I write, but these dead quirky creatures are welcome company.

Writing has been good therapy, but it has been and is my voice as well. I have many excellent conversations planned inside my head, but I can never get them out. I am not eloquent. I am not one of the very few with the genius gene. I don’t impress or interest most people, and there usually isn’t enough time as I am not a very fast talker. I think a lot and while I am busy thinking the conversation moves on.

I have a tendency to think about something that amuses me. I am constantly reminded of lines from Sherlock Holmes, Star Wars, Star Trek, Harry Potter and The Lord of the Rings. I also think about contradictions like the fact that vegetarians can’t wear wool or take most vitamins/medicine because they are made with animal gelatin. Not that I am enjoying their predicament, but if you intend to prevent all living beings from suffering, you are going to have a very restricted life. I am not sure it’s possible. I have have learned not to point that out, however.

Many people have a contradictory behaviour and maybe quiet people have one too. I bet that if you could tap into most quiet people’s thoughts there wouldn’t be silence at all. There’s been a lot of focus on introverts in recent years, especially after Susan Cain published her book Quiet: The Power of Introverts in a World that Can’t Stop Talking. Quiet doesn’t mean quiet. It is true that I am content when I am alone, but it wasn’t always like that. There was a time when I wished I could be like other people, but they tend to be annoying. I have a feeling that friendship doesn’t mean quite the same to me as it does to other people. I am content being in the same room, but less concerned about an emotional connection. Emotions in general is a rather tricky business.

I wrote about why I write on my Norwegian blog several years ago. I believe that was one of my first posts, but I am not sure I did an English version. I was reminded of this when I read Anonymously Autistic’s I want to encourage everyone to write. She has some interesting hashtags, like #SheCan’tBeAutistic. That’s sort of like “but she looks so normal”, which is common theme with invisible diagnoses. How could I possibly have any challenges when I look like I am suposed to? And people wonder why I don’t find them fascinating!

I had better stop before I digress again because I feel a need to do that when I read Anna’s profile, who is not Anna, but calls herself Anonymously Autistic. She’s in the autistic closet. How is this closet? I hope it’s a walk in closet because it sounds awfully uncomfortable to stay inside a small, dark space from IKEA. That’s those silly ideas I get when I talk to people. Sidetracks tend to be the main track in my mind. What can I say? I am not a one track kind of mind. My road map is busy.

Mental illness hysteria

The dandelion is one of my favourite symbils. It is a survivor and as soon as you stop spraying herbicides, these magical flowers will come back in vast numbers.
The dandelion is one of my favourite symbols. As soon as you stop spraying herbicides, these magical flowers will come back in vast numbers. Some don’t want them around, so they kill them with chemicals (or medicine)

I will occassionally write posts that are not directly relevant on a blog about NLD and ASD. The topics are still interesting because we should aim to make our field of vision as wide as possible. Many want to analyse Donald Trump and the diagnosis is usually narcissistic personality disorder. I don’t agree with that assessnent, but there is another interesting question too: Why is it so important for us to hand out diagnoses based on what we see on TV?

The word narcissism is one of those that have lost its meaning. I have a feeling many use it as a synonym for vanity these days. If you have a personality disorder it means that you differ sigificantly from an average person in terms of how you think, feel, perceive or relate to others. I’m not that enthusiastic about the general term personality disorders because I have a feeling that people have fixed ideas about what it is, and many wrongly assume that a diagnosis means you are dangerous. If you have never heard about schizoid personality disorder you may think it has something to do with schizophrenia, and the Merriam Webster Dictionary supports that notion. It says that the word schizoid is suggestive of schizophrenia, but the diagnose describes a person that is apathetic, indifferent, solitary etc. This is a person that neither wants or needs a relationship.

An avoidant personality disorder describes a person that is self-conscious, anxious, and tense in social situations due to fear of rejection. That doesn’t sound like a dangerous person to me. Some feel that a narcissistic personality disorder is, though. The Mayo Clinic defines this as a mental disorder “in which people have an inflated sense of their own importance, a deep need for admiration, and a lack of empathy for others.” It may seem like all politicians have some of these traits, but when I look at Trump on the news I wonder how his need for admiration is expressed. There are a lot of people he doesn’t like, and he doesn’t exactly pretend that he does. It seems to me that narcissists are very predictable, but it’s not very obvious to me that Donald Trump is.

Trump frequently does the unexpected. He has a habit of doing exactly the thing that will make him unpopular, which is why many accuse him of being dangerous and mentally ill. The problem with DSM 5 and ICD 10 is that they describe stereotypical behaviour. These manuals don’t like the unexpected, which is very relevant to ASD and NLD as well.

Autism spectrum disorder is described in ICD 10 under F 80-89 Disorders of psychologcal development, while NLD is not an official diagnose yet. It is still included indirectly because it shares symptoms with Develomental Right Hemisphere Syndrome, Developmental Coordination Disorder, Social-Emotional Processing Disorder, Asberger syndrom, and Gerstmann syndrom. I have never understood why it is regarded as a mental disorder.

I will get more into the research in a later post, and there are people on both sides. Some argue that autism is neurologically based, while others insist that we should embrace the mental illness label, and thus remove some of the shameful element. I am not sure how to feel about it right now, but I don’t like this tendency to label everything that varies from the norm as mental illness. Mental illness can be treated with medicines and neurodevelopmental disorders like autism and ADHD can’t. They require therapy that will cost money and effort. Incidentally, when I was working as a teacher I had a few pupils with ADHD and all of them received Ritalin as the only treatment. There is no doubt that drugs can change behaviour, but that alone is not enough.

Besides, ADHD share many symptoms with NLD, ASD, food allergies, seizures (such as epilepsy), sensory disorders and sleep disorders. If medicine don’t work it could be because the child was misdiagnosed. Themes like independence and being allowed to be different are important to many of us. That could be seen as a violation of the norm. Does it make you mentally ill if you want to live an independent life, preferably off the grid? In my opinion that would prove your sanity, but that doesn’t mean I intend to homestead in Alaska.