Disturbed after watching an autism documentary

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CyclopsSummers
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09 Oct 2012, 2:42 pm

So, yesterday evening, Dutch television aired a film of one hour and 15 minutes long, a documentary on an autistic man, it was called De regels van Matthijs ('Matthijs' rules'). I was interested in watching it after reading the blurb in the TV guide. So I did watch it, on the internet today after it aired on TV. And it made me feel very angry and disturbed.

I'm not disturbed in the more 'detached' sense, where you feel emotionally shaken by what you've just seen, but are able to take distance from it. I feel as though this has touched deep nerves in me.
The main gist of the documentary is that it's about this autistic man, Matthijs, who is 40 years old and was diagnosed with an ASD (high-functioning, but I forget the specific diagnosis). He lives in a small apartment and basically isn't doing so well in his life. He's in debt, and expresses that he has trouble conforming to society's rules. He has his own system of counting the date, instead of numerating the days, months and year, because he finds it easier that way. It never becomes clear what else are his special interests and hobbies or even whether he has a job or receives social service, though I assume the latter (I honestly forget).
The film basically chronicles a couple of months of his life, and focuses on the failure and hardship of his life. It's very minimalistic in its approach. It uses relatively long silent parts, and the parts where Matthijs talks about his views and his life, there are elements of repetition. For a one hour film, surprisingly little happens.
What grabbed me the most about this film (in a negative way), is how Matthijs is presented as being a thrall of his ASD in every way. I think the director didn't intend it that way, but that's how it came across to me. He comes across as, I can't use a different word, pathetic and childish and completely out of touch with reality. Now you may say that these traits may often be found in the more dire cases of high-functioning autistics and Aspergers, but to focus upon it so intensely, at the cost of a focus on the positive aspects of his life, is unique for this kind of documentary.

What I'm trying to get at here is, that usually documentary films about autistic individuals are about either adults who, though thoroughly quirky and struggling in their interaction with the outside world, still possess some savant-esque ability, OR about children and their development and how their familiy around them, or their classmates relate to them. Documentaries about autistic individuals tend to end on something of a positive note, and in general have an optimistic atmosphere throughout.

But, in contrast with that, here is the aspect of the documentary that disturbed me the most:

Even before filming of the documentary was finished, Matthijs committed suicide.

I can't put that in any kind of perspective. I don't know what to do with it.

I'm late with this, but I should mention that the director of the documentary is in fact Matthijs' friend. He decided to make a documentary about Matthijs, and Matthijs gave him his consent. The final turn of events was unforeseen. It surprises me that the director (named Marc Schmidt) decided to go through with producing the documentary anyway.

After watching the film, I found an interview with director Schmidt, and I found that he was detached when speaking of his friend. Speaking of him as if he was only a film subject. He mentioned that the relationship with him could get 'very intense' and that he avoided contact with him at times that he didn't feel so good (which I thought is exactly the time when you would want to keep in touch with friends). It appeared to me that there was an element of condescension toward his own friend.
NEVERTHELESS, it did appear as if Matthijs felt particularly comfortable around Marc and greatly valued his friendship.

Still, watching the film threw me for a loop because of how confronting it was. I could recognise parts of myself in Matthijs, but only the severely negative aspects of my life. I normally watch documentaries on autism to look for that type of recognition, but it's usually to find inspiration, to learn, to grow. But this, watching this, felt like being punched in the stomach.

Immediately after the film finished, all I could think was 'I do not want to end up like this, but if things go really, really negatively in my life, I might'.

I honestly just had to get this off my chest, and anyone's thoughts on the matter would be very valuable.

Prior to watching the video, I considered downloading it and posting it on Youtube with subtitles; taking possible legal issues into consideration, I then thought I'd link to the video and post a transcript in English here on WP. But I honestly don't feel like doing either thing.

There are probably people who will think it's a great documentary, and I guess I can understand that, but for me personally, it's just so bad. So so so bad. Emotionally, it just rubs me the wrong way. And that clouds my ability to judge it rationally.


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NewDawn
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10 Oct 2012, 8:56 am

I haven't seen it, but I'll have a look if it's on "Uitzending gemist". Dutch TV seems to have a propensity for showing autism in a very negative way. I remember watching an episode of "Je zal het maar hebben" with a guy on the spectrum with severe anxiety. Nothing else was shown and the interviewer did a rather clumsy and unconvincing act of having a meltdown in a supermarket. It made me feel profoundly sad.



kirayng
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10 Oct 2012, 9:01 am

Nothing different here in the US. There was a CBS report about an autistic man who was so lucky to have his job with the Geek Squad at Best Buy even though he had a master's in computer science! He should be building computers not fixing them for customers at $8 an hour and they make it out like he is so happy to have a job at all because of his Asperger's.

I will take a look at the film, hopefully it's subtitled, my Dutch is a little shaky since leaving Belgium.

Thank you for sharing your thoughts about it. I think it's sad to see that this condition is still so misunderstood despite how much information we have on it now.



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10 Oct 2012, 9:54 am

So its honest to the hardships many with autism face....sounds like a good documentary I think I'll see if I can find it and watch it. Why should documentaries only focus on positives or end on some hopeful note. Things are quite grim for many people, and no it doesn't always get better......also though I just like grim documentaries for some reason.


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genedig65
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10 Oct 2012, 10:21 am

Sounds to me like the director was a bit exploititive in his relationship with the film's main character. His "friend" becomes too intense and the director walks away from him. His "friend" commits suicide and the director continues to publish the movie; not doubt earning Ooohs and Ahhs from the film community...gimme a break.



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10 Oct 2012, 11:15 am

Sounds like he needs to recalibrate high functionng.

Also, so what if he has his own way of keeping track of the date? As long as he dates his checks and stuff the regular way, it's a moot point.

I don't know anything about the director but he might have wanted to air the film as a tribute to his friend. He may sound detached because that's the way some people have to come across to prevent getting too emotional. Either cold and nonchalant or crying and having a hard time talking. I'm like that.

I haven't seen it, so I'm just guessing. If you put subtitles up and link to it, I'll watch it though.


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10 Oct 2012, 11:43 am

kirayng wrote:
Nothing different here in the US. There was a CBS report about an autistic man who was so lucky to have his job with the Geek Squad at Best Buy even though he had a master's in computer science! He should be building computers not fixing them for customers at $8 an hour and they make it out like he is so happy to have a job at all because of his Asperger's.

I will take a look at the film, hopefully it's subtitled, my Dutch is a little shaky since leaving Belgium.

Thank you for sharing your thoughts about it. I think it's sad to see that this condition is still so misunderstood despite how much information we have on it now.
Maybe it's different for others on this board, but I would feel elated to have a job for three bucks an hour licking peoples feet.



CyclopsSummers
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13 Oct 2012, 11:15 am

OliveOilMom wrote:
Sounds like he needs to recalibrate high functionng.

Also, so what if he has his own way of keeping track of the date? As long as he dates his checks and stuff the regular way, it's a moot point.

I don't know anything about the director but he might have wanted to air the film as a tribute to his friend. He may sound detached because that's the way some people have to come across to prevent getting too emotional. Either cold and nonchalant or crying and having a hard time talking. I'm like that.

I haven't seen it, so I'm just guessing. If you put subtitles up and link to it, I'll watch it though.


That makes a lot of sense OliveOilMom. I do consider it a possibility that the director puts on a 'mask' when interviewed; if he does, it would naturally be difficult to recognise for anyone, autistic or not.
The film just left an impact on me, and for the first time in my life, such an impact wasn't positive. I honestly had to let it sink in. I'm not yet ready to re-watch the movie (and as such, unable to provide a translated transcript or subtitles), but that may come eventually.

@SweetLeaf: Yes, I agree with you very much that not every documentary or movie about autism shoiuld focus solely on the positive. However, I have seen documentaries that highlighted the negative aspects of someone's ASD, but also immediately provided possible solutions to the problems they faced, or a form of advice about autism in general, or went on to show how the person in question 'dealt' with what they were facing, by themselves.
This film seems to focus more on the 'downfall', if you will, of the man in question. But that was, of course, as I now can see, the only way the movie could be realised by the director after his friend committed suicide.


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13 Oct 2012, 11:45 am

I agree with Olive Oil Mom and Sweet Leaf, but also wanted to add another aspect.

Depression does develop a LOT in adults with ASD, particularly for those who are not able to find functioning life systems. So say active involvement in their special interests, a job, at least one or two solid relationships of some sort with another person (even if it's only a friendship or family member). So I think it is important for someone to talk about that as being a problem for adults on the spectrum. I think it is an avoidable problem that is largely caused by society and is not an innate part of autism. Not having seen it, but going by your description, I think that the documentary could serve as a way to highlight what can happen to ANY person (even without being on the spectrum) whose life isn't working for them and who feels overwhelming depression.

I am slowly studying suicide as a personal side project, because several people close to me have killed themselves. This doesn't factor into my autism research. But I can tell you that suicidal people (of all sorts) tend to push others away right before they do it, and the people close to them pick up on this and avoid them. There is also a sense of uncomfortableness in talking about them afterward. This is the usual behavior of people surrounding someone who has done this. My guess from what I have read so far is that it is because the idea of suicide, historically, is catching. In not talking about it and keeping a mysterious shame around those who do it, there is a social attempt to keep the idea out of the minds of others.

I hope this helps in some way. It's actually good to be disturbed by something like this. The person in the documentary was a real person and it honors him that his story so touched you that you're thinking critically about it and sharing it with others.



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13 Oct 2012, 2:37 pm

I've watched it by now and also found it very disturbing. I would like to add that AS wasn't Matthijs' only problem. He had (apperantly) type I diabetes, bipolar disorder and major depression. He took risperdal, paroxetin and some other anti-depressant. He committed suicide by overdosing on insulin. The documentary shows a previous suicide attempt in the same manner, which Matthijs survived because his friend (the director) found him in time and called emergency services.

Difficult as it may be to watch this, I think the director made the right decision to publish it. He did consult Matthijs' psychiatrist and other parties involved. Matthijs was not without help. Besides his friend, there were 6 mental health care workers, his father and a neighbour. Yet Matthijs felt utterly alone and misunderstood. His meltdowns in the film show the deepest frustation and despair.

In many ways, Matthijs reminded me of my own brother, who was never diagnosed with anything, and was as unreachable as Matthijs was, even for me. I've always felt (and still feel) a great deal of frustration that I wasn't able to help my brother. I got the impression that Matthijs' friend the director felt the same way. I frankly am at a loss and would have felt the same way as I feel about my brother if Matthijs had been my friend.

I hope that this film will contribute to a debate of how people like Matthijs can be supported.

There is an impression of the documentary on YouTube with English subtitles. I feel hestitant to post the link here, so I won't. Be warned that it is very intense. You can find it by searching for "De Regels van Matthijs (Matthew's Laws) 2012".