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Communication Shutdown and Autism

The AEIOU Foundation

The AEIOU Foundation [1] is a support and advocacy organisation for people on the Autism Spectrum, note that they clearly say Autism Spectrum Disorder (ASD) on their About page, some of what they write would be less wrong if it was claimed to apply to only non-verbal Autistics or people claimed to be Low Functioning Autistic (LFA). But in regard to the Autism Spectrum they just don’t seem to know much about it, a lot of their web pages seem to be based on the assumption that anyone who is on the Spectrum will be lucky if they can ever live independently. However it seems that most people who can be diagnosed with an ASD have typical social skills by the standards of the IT industry and can get by without any special assistance. The entire site seems to be written about people on the Spectrum by people who know little of their experiences and contains hardly any information that matches what I’ve read from various people on the Spectrum (of course there are a wide range of experiences that differ greatly).

They have a link to “Autism Related Sites” which starts with “Autism Speaks” (the Wikipedia page about Autism Speaks is worth reading – note the section about immunisation research which has been repeatedly debunked and the section about legal action against a young autistic blogger). There are many good reasons why Autism Speaks is so widely hated among people on the Spectrum. I think that recommending Autism Speaks is a sign of willful ignorance of almost everything related to Autism.

In their page about describing Autism to NTs they say “Imagine if you suddenly woke up in a foreign country, did not speak the language and had no way of effectively communicating with the people around you“. I’ve been diagnosed with Asperger Syndrome by a psychologist who considers that to be the same as High Functioning Autism (HFA) and I’ve visited more than a few countries. I find the comparison of the Autistic experience to visiting another country to be so strange that I don’t even know where I would begin if I was to comment on where it went wrong.

Finally they have a scrolling bar listing their advertisers at the bottom of ever single page on their site. If someone was going to design a web site specifically to annoy people on the Spectrum then such a scrolling banner would be a good place to start.

Now they probably do some good things to help families with children on the Spectrum. But their ability to do good is really hindered by the lack of input from people on the spectrum, Rachel Cohen-Rottenberg (leader of the Vermont Chapter of the Autistic Self Advocacy Network) wrote an interesting post about AEIOU and noted that none of the people who run AEIOU are Autistic [2].

The Communication Shutdown

Someone got the idea that Neuro-Typical people (NTs) should try and understand what it’s like to be on the Spectrum – which is a reasonable idea. But they decided that the way to do so is to have them refrain from Internet based socialisation and not use Facebook and Twitter for one day. It seems to me that most people on the Spectrum primarily socialise via the Internet, so ceasing Internet based socialisation is likely to make their experience less like that of people on the Spectrum. I’m getting a mental image of a bunch of NTs deciding to go to a night-club for their Internet free evening and then imagining that they are somehow empathising with the experience of people who can never enjoy a night-club.

As an aside, a web site which has anything at all related to disabilities shouldn’t rely on Flash – the Communication Shutdown site totally fails in this regard.

No Stereotypes Here has an interesting analysis of this situation, among other things they comment on the irony of having someone ask them to stop using twitter as part of this campaign [3]. One thing that they suggest is for NTs to have a day without any communication at all.

Some Suggestions for People who Want to Understand

As a communication exercise, try going shopping without speaking, just use hand gestures. For bonus points try doing so in a foreign country where you don’t know the language so you need bidirectional non-verbal communication – with some luck you can complete a transaction without the shopkeeper realising that you are a foreigner. This won’t actually give you much of the Autistic experience, but it’s a good exercise in understanding how communication works.

Someone who wanted to know the down-side of being on the Spectrum could find a sports bar where most patrons support one team and then enter the bar while wearing a jersey indicating support for an opposing team. I don’t recommend doing this because it really wouldn’t be fun, but for a quick approximation of the experience it would probably work well.

It seems to me that paying $5 to a charity and then boasting about doing so on your Facebook page for a day is an easy thing to do. A harder task would be to spend a day reading about the experiences of the people in question and then giving $5 to a charity that is well regarded by the target group.

Another possible way of gaining some understanding would be to have a party where everyone brings their laptop and uses only electronic communication – no speaking at all. This is in fact fairly close to what some of the Geekier (possibly Autistic) members of the IT community do.

6 comments to Communication Shutdown and Autism

  • Robin Nemeth

    Well some people on the spectrum speak too much, I’m told, so there. Usually about one topic.

    I’ve been censored, ridiculed, and threatened with arrest over the last six years simply for saying the word ‘thimerosal’. There are too many people profiting from the genocide that is the administration of 25 microgram per dose flu vaccines.

    Even Ms. Stagliano, of Age of Autism, has been known to censor comments that threaten her own agenda. Why a ‘communication shutdown day’, Kim, if you’re one of those with so much power you can shut down anyone who’s a threat to you with what they might say? Well, I hope you’ve been enjoying working with Autism Speaks. I for one do not intend to shut up, today or in the future, until the truth about what they and you are up to is known.

    The epidemic is not going to stop until the lies do.

    So by not using Facebook for a day, you’re going to understand what is faced by those on the spectrum? You know, I wouldn’t laugh, I would instead be inclined to say “yay hurray for trying”, if the objective just wasn’t so lame.

    You really want to know what it’s like to be on the spectrum? I can give you an idea what it’s like to be on the very highest functioning end, at least from my perspective.

    Don’t just stay off of Facebook for a day. Stay off the entire internet. A day isn’t very long but okay it’s a start. Now, don’t speak to anyone at all for the entire day, in real life, as well. If somebody has a question for you—like oh say “what time is it?” – you can answer them. Because you are able to communicate. Just not make casual conversation. And so, absolutely no telephone calls, no chit chit at home or at work. NONE.

    Now, there’s one more thing you have to do. And before I say this I want to make it absolutely clear that I’m not saying or implying that people on the spectrum smell bad. But they ARE shunned. And I can think of only one easy way to make it so that you, too, will be shunned all day long. Spray yourself with something that stinks to high heaven. Like maybe that deer repellent that smells like rotten eggs.

    Now, go out and face your day. Watch as darn near every last person you encounter makes it plain as the nose on their face that the most important thing is to just GET AWAY FROM YOU. As fast as is humanly possible. It’s not going to be quite the same, because they will no doubt say something to you about why they are so anxious to get away. This would of course never be the case for the person on the autism spectrum.

    You, of course, cannot respond in any way to them about why you’re so stinky. You have to pretend that nothing was ever said.

    Now you have to understand also that this is the experience of the average high functioning individual with autism. The aspie, if you will. Those with more severe autism. I cannot claim to understand what it must be like for them – for those people unable to communicate at all except to yell when they’re obviously in pain. But I imagine that the difference between the high functioning end of the autism spectrum and the lowest functioning end is very much like the difference between being near sighted and being totally blind.

    Silly idea, this staying off of Facebook. But if you should happen to raise some money, I will support what you do on one condition. No hidden agendas. Not on what is said, not on how the money gets spent.

  • etbe

    http://en.wikipedia.org/wiki/Thiomersal_controversy

    Robin: There have been several studies into a possible link between ASDs and vaccination, all of them found no correlation. The Wikipedia page has a lot of detail. The claims of the Playboy playmate and her friends have been debunked.

  • Robin Nemeth

    Um, and what about the claims of Dr. Bernadine Healy, former head of the National Institute of Health? Or the claims of Dr. Peter Fletcher, former Science Chief in the UK? What about the claims of Dr. Poling, whose daughter won a multi-million dollar settlement? I could go on and on.

  • etbe

    http://leftbrainrightbrain.co.uk/2009/09/dr-bernadine-healy-talks-about-vaccines-and-autismor-does-she/

    Bernadine Healy makes speeches in the political style without making any concrete claims. It’s politics not science.

    http://leftbrainrightbrain.co.uk/2006/02/peter-fletcher-melanie-phillips-and-the-daily-mail-a-cracked-facade/

    Peter Fletcher is debunked at the above URL.

    http://blisstree.com/live/the-case-of-hannah-poling/

    Hannah Poling had a rare mitochondrial disorder which was apparently exacerbated by vaccines. The vast majority of the population (including the vast majority of people on the Spectrum) don’t have such a disorder.

    If a child developed symptoms similar to Autism after being in a car crash would you try and blame all cases of Autism on car crashes?

  • etbe

    Kevin: in regard to one of the comments quoted on the Thinking Autism Guide, there is a real difference between communicating verbally and through SMS etc. When I was living in London there were days where my social quota was exhausted for the day by the time I finished work, even ordering food from KFC was too much to handle – as I lived in a hotel that meant I had to go to bed hungry. If it was possible to order pizza delivery by SMS then I would have done so. So it’s not as if having a backup method of communication is only an option for NTs. But others may have different experiences in this regard.

    Thanks for the link.

    As for the comic, why would that require funding? All the Internet comics started by someone just drawing stuff and putting it on the net. There’s no real fixed expense as cameras are dirt cheap.