Please consider helping Safecast

By: Marijn Rongen
April 26th, 2011

In this post the excellent Wil Wheaton pointed out a certain Kickstarter project in need of some pledges. Wil isn’t one to randomly throw around awareness for projects or causes and I thank him for making an exception this time. The project is called Safecast (formerly RDTN.org) and aims to have people measure radiation levels in numerous locations in Japan and distributing this independent data to all who may benefit. Accurate data is something that isn’t available as readily as we would want and is necessary for accurate prevention and protection in the affected areas.

I know from first hand experience how radiation can affect a persons life. In my case it is partly the reason why I’m still alive to type this, the other side of the coin is that all my current health issues are directly or indirectly caused by the collateral damage done during the treatment. Radiation doesn’t discriminate between healthy or sick, young or old. This is why I support this project and try to raise just a little extra awareness through my site.

Visit the Safecast website here, or visit (and pledge if you can) the project on Kickstarter here. Thank you.

On a slightly related note; I’ve created and released a small WordPress plugin today to easily embed Kickstarter widgets in your blog: Easy Kickstarter Widget


Preparing to leave the nest

By: Marijn Rongen
January 21st, 2011

Busy, busy, busy. That’s what I’ve been and still am. Not that I’m complaining, as busy means more work and being self-employed this means more income. Most of which will go directly into my savings accounts. And yes, thats plural. Not exactly spreading the whealth but trying to make the most of it (interest-wise) for the future.

I’ve always intended to buy a place when leaving home, as you will build up capital over the years, as opposed to renting where money just dissappears into someone elses pocket. With the economy being what it is and a housing market that has lost all sense of reality in the Netherlands it will probably be a few years before I leave the nest…

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Annual health check

By: Marijn Rongen
December 14th, 2010

A few weeks ago I had an appointment for my annual health check. This is not the kind of check that is common in some countries, but one that I get as a result of cancer and the treatment. Even though I have gotten rid of cancer over 15 years ago, I still have one health check each year. In this post I would like to tell you a bit about the what, rather than the why. This years’ results came back fine, like they have for years.

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How dare you be so biased?

By: Marijn Rongen
July 14th, 2010

I recently read this article by Harold L Doherty and I almost could not believe he has the arrogance to have such a biased view on autism.

In the article he is attacking people with HFA (High Functioning Autism*) and AS (Asperger’s Syndrome), specifically Alex Plank. As you may or may not know, Alex is the creator of the Wrongplanet.net internet community for everyone with or affected by autism.
He insinuates that being successful in their lives contradicts the impairing nature of autism and therefore they cannot be autistic. What he conveniently forgets to take in account is the difficulties people with HFA and AS face everyday despite being able to function in our society. Being successful in any way does not take these daily struggles away.

Who speaks for whom?

What truly bothers me is that he holds this narrow view of autism while being a father to an autistic child. I agree that his sons abilities are much more restricted than is the case for most people with HFA and AS as his son has LFA (Low Functioning Autism*), but instead of venting his obvious disappointment with his sons unfortunate situation, he should educate himself to the full range of autism spectrum disorders and more specifically how to help his son to cope with life. Both he and his son will benefit.

He rants on about how autistic people with the ability to openly speak for themselves have no right to do so on behalf of all autistic individuals. They cannot possibly know how his son is feeling about something for example. He has a valid point, as no individual can voice his or her opinion and claim to speak for their peers, but isn’t he according to his own logic even more disqualified to speak for his son because he, as a NT (neurotypical, ie. non-autistic), fundamentally thinks in a different way?

Read his blog for some more insight in Harold’s point of view

What about a cure?

His whole animosity against outspoken and active autistic persons is based in the heated debate around a cure and treatments for autism. A lot of (high functioning) autistic people are against a cure for autism in their own case. This does not mean they do not agree with the possible benefits a (partial) cure or treatment may bring to the lives of low functioning autistic people.

It should be stated that the biggest fears in the autism community are not so much about a cure, but more about the effects prenatal tests for autism can have. Prenatal testing is more likely to be available in the future than a cure. The fear is that this testing could lead to abortions based on the presence of autism, which is a scary thought. It reeks of prenatal neurodiversity genocide.

At this time a lot of parents are trying every treatment that is said to “treat autism”. This ranges from special diets to chelation. While some of these treatments are harmless, others are not so safe. The reality at this time is that a cure or effective treatment is a fairy tale. It will remain so while a cause for autism is still unknown.
What we can and should do is find coping strategies and through therapy help those that are having trouble functioning in our society. And if a cure becomes a reality, the choice to take this should ultimately be the choice of the autistic individual and not anyone else, family included.

*Note that I’m not fond of the labels describing an autistic individual as low or high functioning. I used the terms in this article as they comply to the current method of “grading” a persons abilities, this may change by 2013 with the publication of DSM-V.


Diagnosis: Autism

By: Marijn Rongen
May 24th, 2010

A few people might know by now that I am autistic. I have only been officially diagnosed about 2 weeks ago but it was something I have suspected for quite some time. Because of this suspicion I requested a referral to an institute specialized in adult autism diagnosis. This refferal ultimately resulted in an expected diagnosis of Autism.

The reactions of some people on my diagnosis have been weird to say the least. At first some stated they don’t think I “have” autism, and now, after the diagnosis, they react like I am somehow different than before.
This is nonsense of course but it has in such a short time already made clear to me that there is much ignorance and, as a result, prejudice surrounding autism, especially concerning some social aspects.

For example; most autistic people (me included) have a profound lack of empathic abilities. Our (apparent lack of) reaction to other peoples emotional states can often be wrongly interpreted as being rude or anti-social.
I feel the need to state that we (or at least the most of us) do care about other people’s feelings, but we are simply unable to tune in to the other person’s emotional state. We might even be completely unaware of the emotion, even when we are the cause.

The short documentary “Autism Reality” by Alex Plank gives a short and insightful view on autism.

Especially the comment on how mentally exhausting it is to act normal was immediately very recognizable to me. Like most in my position I have learned scripts for social interaction by observing other people. Making eye contact for example, does not come naturally to me and it is a conscious process. Concentrating on someone speaking to me and “acting normal” is therefore mentally hard work and sometimes I can simply not keep up…

For now, let me conclude with this; there are a lot of aspects to autism, both good and bad. Autism in itself is neither good nor bad and, in my opinion, not a disorder but a difference.
I hope you keep that in mind next time you see me or another autistic person!