In 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 … [We] 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.”
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.
Rachel Cohen-Rottenberg blogs at Journeys with Autism.
The “Intense World Syndrome” Theory of Autism appears here by permission.
Rachel Cohen-Rottenberg’s Memoir is The Uncharted Path: My Journey with Late-Diagnosed Autism.