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Jun2
The “Intense World Syndrome” Theory of Autism
17 CommentsIn an October, 2007 article, Henry Markram, Tania Rinaldi, and Kamila Markram of the Brain Mind Institute, Ecole Polytechnique Fédérale de Lausanne (EPFL), Switzerland, posit a new theory about how the brains of autistic people work. They refer to autism as Intense World Syndrome, turning widely accepted thinking about autism on its head.
I recently stumbled across this article, so I thought I’d share some of its insights. While I dislike some of the authors’ attitudes toward autism and autistic people, their theory seems to reflect many of the ways in which we describe our own experiences.
I’ll get the negative aspects of the article out of the way first, and then we can look at the positive things the authors have to say.
Problems with the Article
1. There is the usual garbage about how we suffer from a horrendous disease. For example, the article begins with the following words: “Autism is a devastating neurodevelopmental disorder…”They’re lucky I’m tenacious and hopelessly optimistic. And autistic and hyper-focused. Otherwise, I’d have stopped right there.
2. The authors show a stunning lack of knowledge about how autistic people learn and develop over the course of our lives. For example, the authors state, “Autism is now recognized as a neurodevelopmental disorder manifesting within the first 3 years after birth and progressively worsening in the course of life.”
I guess I’m lucky I can still write. I’d better get going on the rest of this post before I lose any more brain function.
3. The authors make the blithe assumption that autism can (and should) be cured.
They first posit that autism is a disorder in which the “normal unfolding of the genome can be sabotaged by an epigenetic attack.” An epigenetic attack is one that causes a genetic change without affecting the underlying DNA sequence. The authors speculate on possible causes of such an attack, such as environmental toxins.
But never fear. There’s hope for us mutants yet. The authors continue: “Understanding the ultimate cause of autism lies in understanding the nature of the epigenetic attack and developing the ultimate cure for autism lies in being able to prevent this attack and reverse its effects once it has occurred.”
So someday, someone may try to turn me into a normal person. Good luck.
4. They come to their conclusions based mainly on research using lab rats. (I’m not defending the rights of lab rats. I’m pretty warm and fuzzy toward most animals, but as far as I’m concerned, rats are on their own.) My issue is that they use rats to arrive at conclusions that they could also arrive at by talking to autistic people.
If I didn’t mind flying, being away from home, or going on sensory overload, I’d probably spend some time outside one of these labs with a sign reading:
TO THE NEURO-TYPICAL DOCTORS:
FORGET ABOUT THE RATS.
THERE IS AN AUTISTIC PERSON OUTSIDE.
SHE WILL TALK TO YOU FOR FREE.
JUST USE YOUR WORDS, AND YOU WILL FIND TRUTH.Okay, so much for the problems. Let’s get to the good stuff.
Definition of Intense World Syndrome
The authors lay out their hypothesis in this way:“Based on the recent multi-screening results obtained on the valproic acid (VPA) rat model of autism, we propose here a unifying hypothesis of autism where the core neurophysiological pathology is excessive neuronal information processing and storage in local circuits of the brain, which gives rise to hyper-functioning of the brain regions most affected. Such hyper-functioning in different brain regions is proposed to cause hyper-perception, hyper-attention, and hyper-memory that could potentially explain the full spectrum of symptoms in autism.”
Neurons process and transmit information by electrochemical signals in the brain. Sensory neurons respond to visual, auditory, tactile, and other stimuli. So, according to these scientists, autistic people do an excessive amount of sensory processing. We experience the sensory world more intensely than other people, we attend to details in a more focused way than other people, and we store information (that interests us) far longer than other people.
Makes sense to me.
They continue: “We propose that a common molecular syndrome is activated in autism that produces hyper-functioning in a coordinated manner by forming hyper-reactive and hyper-plastic microcircuits in different brain areas.” As far as I can tell, they are positing that the autistic brain reacts more strongly to sensory stimuli than a neuro-typical brain (thus, the “hyper-reactive” microcircuits), and rearranges the connections between its neurons more often than a neuro-typical brain (thus, the “hyper-plastic” microcircuits).
The researchers then suggest that our hyper-reactive and hyper-plastic microcircuits cause us difficulty in integrating sensory stimuli. Thus, we tend to focus intensely on one part of the sensory world, and we have difficulty shifting our attention:
“This core hyper-functioning pathology is proposed to cause the spectrum of autistic symptoms by rendering local neural circuits hyper-sensitive to novel and past stimulation, and once activated, these microcircuits could become autonomous, difficult to control and coordinate with the activity in other microcircuits. Hyper-reactivity and hyper-plasticity are therefore proposed to cause exaggerated perception to fragments of a sensory world that are normally holistically correlated…and furthermore to cause hyper-focusing on fragments of the sensory world with exaggerated and persistent attention. Such hyper-attention could become difficult to shift to new stimuli…The positive consequences are exceptional capabilities for specific tasks while the negative consequences are a rapid lock down of behavioral routines to a minute fraction of possibilities, which are then repeated excessively.”
The authors also discuss their finding that autistic people may have a hyper-reactive amygdala, the part of the brain that processes memory and emotion. Because the amygdala is hyper-reactive, they believe, we do not let go of fear memories in the same way as neuro-typical people. We therefore perseverate as a way to calm and channel our anxiety.
Having concluded that our brains are highly sensitive, the authors assert: “In such a scenario, the world may become painfully intense for autistics and we, therefore, propose autism as an Intense World Syndrome.”
I think that’s right.
Now for the fun part: upending the accepted theories.
Poor Executive Function Theory
The term executive function refers to a person’s ability to disengage from his or her current environment in order to act upon a model of behavior in the mind or a series of future goals. Because autistic people tend to have poor executive function and a preference for sameness and routine, researchers had assumed that this deficit derived from hypo-functioning of the pre-frontal lobes.However, the Intense World Syndrome theory posits that poor executive function derives from hyper-functionality of the brain’s circuits, causing an autistic person to attend to, remember, and focus on particular pieces of information, especially stimuli in one’s current environment.
Theory of Mind (ToM) and Mind-Blindness
Just because it’s so wonderful to hear someone else say these things, I’ll let the researchers speak for themselves:“Autistic people are thought to be severely impaired in empathising with other people and ‘reading their mind,’ which is captured in the ‘theory of mind’ or ‘mind-blindness’ theory of autism… The proposed deficits in reading other people’s feelings and thoughts and the lack in empathising with other people has been commonly used to explain the impairments in social interactions and communication as well as inappropriate responses in social encounters…
We…propose that the autistic person may perceive his surroundings not only as overwhelmingly intense due to hyper-reactivity of primary sensory areas, but also as aversive and highly stressful due to a hyper-reactive amygdala, which also makes quick and powerful fear associations with usually neutral stimuli. The autistic person may well try to cope with the intense and aversive world by avoidance. Thus, impaired social interactions and withdrawal may not be the result of a lack of compassion, incapability to put oneself into some else’s position or lack of emotionality, but quite to the contrary a result of an intensely if not painfully aversively perceived environment.”
I think they’re onto us now.
The Hypo-Functioning Amygdala Theory
I’ll let the authors speak for themselves again:“The current version of the amygdala theory of autism assumes a hypo-functional amygdala, which leads to lack or inappropriateness of social behavior in autism. In this view, autists fail to assign emotional significance to their environment and for this reason are not interested in others, do not attend to faces, and fail to engage in normal social interaction…[W]e propose that this view may be not correct and that quite to the contrary, the amygdala in the autistic individual may be hyper-reactive which leads to rapid excessive responses to socio-emotional stimuli. In this view, the autistic person would be overwhelmed with emotional significance and salience. As a consequence, the subject would want to avoid this emotional overload and would have to withdraw from situations, such as social encounters, which are rich in complex stimuli.”
Amazing, isn’t it? I keep reading this paragraph over and over, just to make sure it’s real.
The “Autistic Person Is Missing Some Puzzle Pieces” Theory
Far from considering autistic people as incomplete individuals with missing pieces, the authors conclude that “the autistic person is an individual with remarkable and far above average capabilities due to greatly enhanced perception, attention and memory. In fact, it is this hyper-functionality which could render the individual debilitated.”In Closing
I found my way to the Intense World Syndrome theory by way of a great article by Maia Szalavitz. The article discusses Intense World Syndrome and contains some very good information about autism and empathy.Looks like word is getting out.
© 2009 by Rachel Cohen-Rottenberg
17 Responses to “The “Intense World Syndrome” Theory of Autism”
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I found an article about this http://www.thestar.com/article/633688 well it is related anyways. not sure how i found it though.
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John Dale Lyons June 2nd, 2009 at 8:53 pm
I think this is true. Severe autism is indeed a disability. Highly functional autism, aka Aspergers, is a different ability. Reading this brings to mind “Mrs. Dalloway” and Septimus Smith, who could feel too much, not too little. He was so overwhelmed he thought he couldn’t feel- when the opposite was true. I think all Aspies, and these researchers, should read “Mrs. Dalloway” (by Virginia Woolf).
ADD has similar characteristics, which is why many Aspies have both diagnoses. People with ADD hyperfocus on some things, but can’t focus on trivial things. Read Ned Hallowell’s books on ADD- it’s a cousin to AS, in my opinion.
Obviously, there is some evolutionary advantages to these genes, or else they wouldn’t be so common. I am sure many creative people had ADD and/or AS. I think Einstein had both. I would be loathe to breed them out of the gene pool.
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Rachel, I love your witty writing. And I love this article. It sounds right on, to me.
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Jennifer June 3rd, 2009 at 4:17 am
I have learnt a lot from you Rachel, and from other Aspies here, and on Wrong Planet etc.
My daughter feels quite happy with her unofficial (autistic)status. I know that some people would find it irresponsible of me, because she doesn’t have an official diagnosis yet, but I have explained about Einstein and Edison and how they had a special brain that saw the world in a diffierent way. I explained about how Einstein didn’t speak till he was 5, and how lots of people probably thought he was stupid at that time, but that they were wrong. I showed her a book in the library about an autistic child, who didn’t like it when plans suddenly changed. She recognised herself in this sort of thing. She seems to be taking the world in her stride, even though her difficulties have meant that she seems to be a kid who is slow at school. She’s not high functioning in the way that Aspies can, and camouflage their condition through great achievements academically (or not yet, anyway.)
Rachel, something you wrote about eye-contact and conversation being difficult to do simultaneously, is something I mentioned when asking her teacher not to force her to make eye-contact.
I hope that this helps my daughter, because she found that insistence on eye-contact traumatic.
I think that if we knew how to approach the upbringing of autistic children, and I mean ALL autistic children (even the ones who, for example, never speak), in a way that they would feel comfortable, their autism wouldn’t be so debilitating in an NT world.It’s not a cure, but it’s a way of enabling autistic people to understand themselves, and what they need, so that they can facilitate it for themselves as adults, where possible. This is what the average NT child already receives (more or less.) We need to make it possible for autistic children too.
Rachel, it’s very, very interesting information, because it’s actually saying that Autistic people are like a bit like comic-book superhero’s with supersenses, and superconcentrated mental abilities. Thank you for sharing it!
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I do wonder how they know if rats have autism?
Great post BTW.
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Thanks, Farnel, and welcome.
In answer to your question…Apparently, the researchers inject pregnant rats with valproic acid (VPA), an anticonvulsant that has been linked to autism in children whose mothers took the drug in the first trimester of pregnancy. I don’t know how substantial the link is, or how many scientists actually believe there is a link at all. In any case, some of the VPA-exposed rats appear to have the symptoms of autism specified in the DSM-IV and other literature. It’s called the VPA Rat Model of Autism.
It’s so insulting. I don’t mind a Rat Model of any disease on the planet, but autism is not a disease. It’s who I am. It’s pretty weird to have a Rat Model of Who I Am.
And why experiment on rats when you have living, verbal, autistic experts who will talk your socks off and answer any question you may have about autism? I don’t know. Maybe because we know more than they do? It’s another one of those NT behaviors I will never understand.
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John Dale Lyons June 3rd, 2009 at 8:08 pm
Rachel: Let’s give rats a scientific education, so that we can understand a scientist’s mind.
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John: Great idea! We’d better get them enrolled as young rats, while their minds are still impressionable.
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Dear Rachel,
Love your excellent review, and am intrigued by Intense World Theory. It seems to really explain a lot and confirms what we sort of know intuitively, that aspies/auties are not lacking something — it’s not a disease/injury — but are experiencing the world differently, though in a valid way. (!) That’s also why it’s a spectrum (which, in my opinion, extends rather far into the supposedly NT side of things). I do think the explanation given by the researchers for the difficulty in social interaction is too simplistic; my hunch is that there is something more complex going on. Anyway, my aspie son will like all this — with his super-abilities, he can now start planning to TAKE OVER THE WOOORRLD… -
Hi Ullie, good hear from you! To my (autistic) mind, Intense World Syndrome theory is the closest that the scientific community has ever come to understanding autism. Now, if I could only use my Aspie super-powers to get the researchers to listen to us ALL the time.
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Vincent July 19th, 2009 at 10:35 am
Hi Rachel,
Your articles are an oasis in what has been a desert existence for me in the past. I like the first two words… intense world but personally would replace “syndrome” with “disability” or something along that line… perhaps … as syndrome is connected to disease — at least in my thinking.
I’ve been meaning to ask you… I really like Elaine Aron’s work on the highly sensitive person, but I don’t like the term she uses for the sensitive’s person’s counterpart using “non sensitive”. What could be a better term? Would Neurotypical work?
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Hi Vincent,
Your take on the word “syndrome” is interesting. I’ve always thought of the word as fairly neutral. I try to use the word “condition” whenever I can, as in “autism spectrum condition” rather than “autism spectrum disorder,” but it’s not always possible. I also try to stay away from the word “disability” unless I’m talking about something very specific. “Intense World Disability” seems to imply that our whole experience of the world is a disability, which doesn’t work for me.
The first time I read a little of Elaine Aron’s work, I felt like she’d been spying on me my whole life.
I suppose the counterpart of “sensitive” would be “insensitive,” but that would be a tad judgmental. “Neuro-typical” or “typical” or “average” would probably be better. -
This last line?—
Far from considering autistic people as incomplete individuals with missing pieces, the authors conclude that “the autistic person is an individual with remarkable and far above average capabilities due to greatly enhanced perception, attention and memory. In fact, it is this hyper-functionality which could render the individual debilitated.”
—…made me just burst into tears.
(Not joking in the least.)
This is EXACTLY why I had to drop out of college for a year & a half [& countingrrrrrgh]—in spite of being the most goddamn devoted & prolific student in the whole damned college.
I don’t, uh…”do” moderation. My mother says I’ll crash & burn, be a bum on the streets—if I don’t learn how to compromise my sense of integrity with real world expectations & deadlines &—
I just want to shriek & kick something HARD whenever anybody tells me that functioning at a much lower level should be “a cakewalk for a brilliant kid” like me!
Know my mom’s favourite thing to opine? “You’d be so perfect—the world would be soooo much easier…!—if only we could find that ‘off’ switch!”
UGH!
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bluedancer January 15th, 2010 at 5:37 pm
hi—i’ve read some of your blog, have always enjoyed it and usually find something to relate to. (i just haven’t posted until now.)
this is fascinating, and it is very validating. it’s almost amusing to me that most current theories have those with AS (or NLD’s) “under-stimulated” or “hypo-functioning” in some areas of the brain. the amygdala? hypo-functioning? as if i just don’t make much eye contact because—oh well—haven’t gotten around to it yet, or just don’t care to. (no. it’s anxiety-provoking! and i agree: they could just talk to someone, and get the same info.)
again—it gives words to things that have had some intuitive meaning to me, but which i just couldn’t really articulate (not having the science, and all.) thank you for posting this.
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Hi bluedancer,
Thanks for your comment, and welcome!
P.S. Your avatar is amazing!
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Excellent!
I’d read something similar in a book about neuroplasticity just recently…the idea that autistic people somehow miss the period in early infancy where neural pathways are usually ‘pruned back’ to distinguish important stimuli from unimportant.
Hence, every time the autistic/aspie hears a sound, the *whole* auditory cortex activates, rather than just the specific pathways for that kind of sound.Your description sounds even better – hyper intensity – makes a lot of sense, especially in the emotional realm, where the accepted ‘wisdom’ is so firmly on the hypo-emotional side of things.
In general, this theory meshes nicely with my experience of engaging with typical people and scenarios, whereby going too fast is just as out-of-sync as going too slow.
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I have been researching my way around the internet for a couple of years now, looking for information that could help me to discover whether I would be considered on the spectrum or not. Professional assessment of adults in this part of the US starts at about $1500, which is $3500 more than I have! I am applying for disability under a large stack of other psychiatric diagnoses, but so much would be explained by the Intense World Theory of autism, including my severe reactions to childhood trauma (that is, traumatic events that were worse than the everyday trauma I experienced and still experience just being in the world), that I am really glad that you’ve done this bit of research for me!
I have seen bits and pieces of this theory floating around the autist blogosphere for many months, but this is the first research article I have seen that takes a scientific approach to the idea–whatever that is worth; I know opinions on science vary, especially on NT approaches to science. I can’t find any better description of my fear responses that I apparently started to exhibit in infancy in reaction to any but a very narrow set of stimuli, as well as my rather deep attachment to the intensity of my sensory and emotional experiences right up to the point where they pass the limit into pain. Sometimes I can stay with them a little beyond, sort of surfing an intense pleasure/pain circuit, but there is still a limit beyond which I cannot function.
Sociability is so fraught with emotional traps and overloaded with symbolic meaning that I feel paranoid sometimes, as though I am purposefully, or rather obsessively, reading too much into things when I have a personal stake in what they “really” mean, while remaining completely obtuse to those interactions that hold no consequences for me that I know of.
I still am not sure whether I seem like I am on the spectrum because I have become very sensitive to stimuli as a PTSD reaction or whether my PTSD reactions are so severe because I am hypersensitive to stimuli and therefore more easily and more deeply traumatized than another may have been in my place. I tend to think the latter when I recall stories my mother told about my behavior as a very young child, before the really major traumas occurred. Not that minor ones didn’t occur everyday–they did.
Anyway. Thought I’d share what this post brought up for me. I will go and read the article now. I’ll just bleep out the more ridiculous remarks. Thanks for posting this.
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