~Rumi

All day I think about it, then at night I say it. Where did I come from, and what am I supposed to be doing? I have no idea. My soul is from elsewhere, I'm sure of that. And I intend to end up there...Who looks out with my eyes? What is the soul? I cannot stop asking. If I could taste one sip of an answer, I could break out of this prison...I didn't come here of my own accord, and I can't leave that way. Whoever brought me here will have to take me home.

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09 March 2009

World Autism Interviews: IvarTJ/ Norway

Self portraits
Ivar. Isn't he cute?

Interview with Ivar

IvarTJ lives in Stavanger, Norway. He is Asperger's autistic. He is currently going to school and has a passion for website development. Ivar is attending "Videregående," which is Norwegian for upper secondary school, which also simply means high school in English. Click here to visit Ivar's blog site called A-spies HQ Norway.

E: Tell me about your city.

Ivar: The city I live in is called Stavanger - at the southwest coast of Norway. Because of the city's history with the petroleum industry it is sometimes called the "Capital of Oil" in Norway.

E: How old were you when you received an Autism Spectrum Disorder diagnosis?

Ivar: I got a diagnosis of Asperger syndrome when I was around 13 years old.

E: Is anyone else in your family on the spectrum?

Ivar: No one else has an official diagnosis that I know of, although I'm not entirely knowledgeable as to what is supposedly "normal" behavior - so I probably wouldn't know for sure whether there were anyone else (without very noticeable disabilities).

E: How do families, and people in general, go about obtaining a diagnosis in Norway? Is the system easy to use?

Ivar: I'm not quite educated about the system in Norway or anywhere else. Though I've got the impression that it is more normal to see a government-paid psychologist for a diagnosis rather than seeing a (medical?) doctor as I've got the impression people do in the US - though I suspect someone may correct me on this one. It is generally typical for things like this to be government-run in Norway, as we have a tradition of social democracy.

E: Does Norway provide adequate services for autistic people?

Ivar: A push for better services appears to be the norm in the whole autism community, including the Autistic Community. This is no different in Norway, though many autistic adults I've communicated with feel that their group has been neglected in favour of parent groups. As the national autism society in Norway (Autismeforeningen) have often appeared to be more parent-oriented.
There is a wish for self-advocacy groups for people on the spectrum. We've also got some inspiration from the other Scandinavian countries, Sweden and Denmark, were similar networks appear established. The language barrier isn't very significant among the Scandinavian countries, even without English.

E: Do you consider yourself a member of the growing Autistic Community?

Ivar: I believe I am, or at least I take great interest in the Autistic Community. Some people have suggested that I'm obsessed with autism. Personally, I would say that I have a lot of interest in the many very different people, with or without autism, related to the autistic community.

E: Tell me about the Autistic Community in the Norway.

Ivar: There is certainly communication among autistics over the Norwegian-written Internet. I've also encouraged and participated in a few meetups here in Stavanger among people with Asperger's - though I wouldn't call it a well-established Autistic Community. Disputes happen as in many other online communities, especially when there's differing ideas about some of the more fundamental aspects of a community - like who to include.
I've strongly supported inclusion of more disabled autistic individuals willing to participate in a self-advocacy network, as well as opposed naming a possible network with anything that would suggest that the network did otherwise. Not everyone understands why when few among us are acquainted with more disabled individuals on the spectrum.

E: What is most appealing to you about the worldwide Autistic Community?

Ivar: As I probably indicated before, it is the many different people with many different backgrounds. I first got introduced to the online Autistic Community through the online forum called 'Aspies For Freedom' shortly after I was diagnosed. Through this community I read from people whom I felt I had a lot in common with, and I definitely got more comfortable with the way I was after previously having experienced bullying based on my behaviour.

E: Tell me about education for children who are on the spectrum in the Norway. Are there special programs and classrooms? Mainstreaming? Accommodations? Legal protection?

Ivar: Again I have to confess my ignorance. Of the accommodations I've experienced is probably an aide in lower secondary, which is the most notable. I felt it was unneeded, and the Aspies For Freedom online community gave me an opportunity to rant about my aide with other youths who apparently had similar feelings about their aides. One girl on the Aspies For Freedom forum planned to get rid of her diagnosis of Asperger's merely to avoid her aide. Really, I obviously couldn't benefit from having an aide, though I suspect others may develop more meaningful relationships with their aides.

From a previous interview on your blog with Norah vd Stel I've read that the government in Holland have a focus on inclusion and thus attempted to avoid having pupils in special schools. A mentality of "equality" exists in Norway as well, which may be one of the aspects of social democracies that can be tough on autistic kids - although it is frequently pointed out that equal opportunities isn't always the same as equal treatment.

E: Give me the gist of how disability is viewed in Norway.

Ivar: In a heated discussion at school about prenatal testing and Down syndrome, I heard someone argue that it was perfectly reasonable to abort babies with Down's... because it was a "syndrome".

This person's obvious lack of knowledge of the term is something that actually reflects Norwegians confusion regarding what words to use in relation to disabilities. In an actually quite important news article that argued the rights of autistic adults, the title was written as "Bullied and harassed on the basis of his disease". The person whom the article referred to, whom I also am acquainted with through online discussion, didn't seem to mind that the journalist referred to Asperger's as a "disease" - which probably would have caused some reactions if it was written in an English-written newspaper. Additionally, quite a few autism-related forum dwellers do not distinguish between "condition" and "diagnosis". It is thus hard to interpret how people view autism or other disabilities on the basis of their language - as many may call autism a disease merely because they can't come up with a more appropriate word, or are unfamiliar with the history of disability rights and see no deeper meaning in what words they use.

So, for various other reasons as well, it hasn't been easy for me to determine how disability is viewed in Norway, but from what I can tell there certainly doesn't appear to be any consensus.

E: You dealt with bullies when you were younger at school. How did this make you feel?

Ivar: It was primarily psychological bullying, there wasn't much physical besides once having experienced a shower from a garden hose. Luckily someone nearby was willing to give me something dry so that I didn't need to walk all the way back home with wet clothes.

Almost seven years of repeated teasing through primary. Pretty much everything "not normal" was made fun of - how I walked, how I talked, what toys I played with, and many other things. On the basis of all this a bully concluded that "You're failing" - a saying which he repeated before me for many years. I was also given a hard time when, as an example, my school books were thrown out of a second floor window in the classroom.

I was very depressed throughout primary, but after primary, when I seldom had to encounter my previous bullies, things went more pleasantly.

E: What did adults do that made the situation worse? Do you wish things had been handled differently?

Ivar: I wasn't very eager to notify teachers or parents about the teasing. It was filled with shame, and I was convinced that it wasn't "real bullying" as videos of physical bullying on the telly [television] appeared way more serious. Besides, I felt that telling of the bullying was unlikely to do much if anything. Another pupil who supported me a lot throughout primary did however notify my teacher, and apparently one of the bullies then got a hard smack on his hand. Still, the bullying continued throughout primary.

E: If you had a son on the spectrum, who was being bullied, what actions would you take to help him?

Ivar: Considering that I felt that my situation was unavoidable as long as the bullies went on, I find this to be a very tough one. It would of course be dependent on the situation, but I would probably attempt to maintain my son's esteem, be very aggressive against any bullying, and be sceptical of claims from teachers as well as my son saying it is all alright.

E: What is your understanding of the biomedical approach to autism?

Ivar: I associate the biomedical approach, in the context of autism, with a treatment approach that is based on much less rigorous science. I believe something remotely similar has been said by Bernard Rimland - the founder of Autism Research Institute, which is basically the headquarters of the so-called "Defeat Autism Now!" network.

I also think that this approach is one of the most spookiest things uncritical thinking has brought to modern society.

E: Do you support the biomedical approach?

Ivar: I support appropriate scientific method, and after having heard a lot about the biomedical approach I have become rather convinced that quite a few of the treatments included in the biomedical approach are not based on sound science. 

Though people should trust an academic opinion more than mine, which causes me to refer often to Michael Fitzpatrick's recent book -Defeating Autism: A Damaging Delusion.

E: Do you know of any autistic adults who have been helped by the biomedical approach?

Ivar: I do know of one young Norwegian woman whom I see as having been very much into the biomedical approach. Once I heard from her she was considering chelation, though I don't know whether she went through with it. She did appear to believe that she has been helped by the biomedical approach. I can't say that for sure, as I, among other things, don't find her spelling much improved - it's still terrible, if not even worse. Using anecdotes as valid evidence in science only becomes self-contradictory anyway.

E: You used to be on a casein-free diet. What was the purpose of this diet?

Ivar: About the same time as I was diagnosed with Asperger's I was tested for what was called "protein intolerance" (referring to the proteins casein and gluten). According to the theory associated with the Norwegian doctor Karl Ludvig Reichelt, who first articulated a possible connection between opioid excess and autism in 1991, I could be excreting opioid peptides that also affected the working ability of my brain. This was tested with liquid chromatography (HPLC). My family was told that I was basically "milk-addicted" on the basis of the results, and a diet free of diary products was suggested.

I have thus until recently been on a diet free of milk. Personally I've always been sceptical, though my mom had faith in the diet. The diet stopped after we heard of a study that indicated that people on a gluten and casein free diet could develop osteoporosis. Additionally, we have heard of a study that got a lot of media attention in the English-spoken media in March of 2008, but not in the Norwegian media despite its relevance to the popular culture surrounding gluten and casein free diet here.

The authors of the study concluded that its findings demonstrates that the test I was subjected to, which was the basis of the claim that I was "milk-addicted", has no relevant use in relation to autism. The study found that, although a test with liquid chromatography could indicate excretion of opioid peptides, further testing including mass spectrometry rejected presence of opioid peptides in all 65 autistic and 158 control participators - which I find utterly damning.

E: What are a few of your struggles--as far as being on the spectrum--and how do you deal with them?

Ivar: A problem that I don't see others struggle with as much as I do, would be getting work done - major procrastination issues. Through the autistic online community I've got to know some possible explanations - it appears to be called executive dysfunction, or inertia as it is called in an article at Autistics.org. It can perhaps also be related to some undiagnosed ADD in me.

E: What is the one thing you would most like people to know most about autism?

Ivar: I've done a bit of philosophising (I do a lot of just that) on what autism is, what it means, and what it shouldn't mean. I've concluded that autism is first of all a concept, a name we've given an array of traits frequently appearing in the same people - which of course is the basic definition of syndrome. That people have these traits may mean that they should be given special support or treatment, but I find that applying irrational feelings to the concept, such as thinking that it is something that you should be frightened of, see as pitiful, or the reason to love somebody, can appear to be the reason behind irrational actions done in relation to autism. Though, people may disagree at will.

E: Just for fun, what is something about the Norway you would like other people to know?

Ivar: We don't have polar bears. Seriously, that's a myth.

Another thing, in Norway cars tend to stop if you appear to be planning a walk over the road - which unfortunately has caused a few car accidents involving Norwegians outside of Norway.

Thank you so much Ivar for this fabulous interview. You have given readers valuable insight. Keep up the fabulous art work!

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