At the ICare4Autism Conference, held in Jerusalem August 1st & 2nd, I had the opportunity to interview the neuroscientist team Henry and Kamila Markram who created The Intense World Theory for Autism. Henry Markram is also director of Blue Brain, and is a coordinator on The Human Brain Project. Both were at the conference presenting. The Intense World Theory for Autism states autism is the result of a “super charged brain.” Feelings, visual, auditory and tactile sensations are felt so intensely they are painful. These intense feelings, coupled with extreme pain memory causes the child to become overwhelmed and shut down, withdrawing from stimulus.
I first read The Intense World Theory in March of this past year. I was also just beginning to find blogs written by Autistics. My world completely changed. It was the first time I heard anyone working in the field of autism who did not speak of it as a deficit. I remember reading every paper they’d written, making Richard read everything I was finding as well. We stayed up every night for weeks discussing what this might mean, how it changed our view of our daughter, how it completely upended how we worked and communicated with her. It was as close to a spiritual awakening as I’ve ever had. I felt as though everything I thought I knew about Emma opened up and I was introduced to a vibrant, new and hopeful world.
So it was with great excitement that I sat down with Kamila and Henry Markram after their presentation on August 1st. I have not delineated who was speaking, other than to write my questions in bold, as the conversation was a casual one and the dialogue often overlapped. What follows is an edited version of my interview as we spoke for close to an hour and I didn’t want to repeat much of what was covered in their terrific interview with John Scott Holman of Wrong Planet. For a more thorough reading of The Intense World Theory of Autism read his interview ‘here‘.
In your presentation you spoke about neuroscience and how the biggest impediment to Autism is that it continues to be listed in the same category as mental retardation in the DSM. (Diagnostic and Statistical Manual of Mental Disorders) Can you talk about that a bit more?
“Autism is not a form of mental retardation. If parents approach their child as mentally retarded, then naturally they will apply a whole program of hammering the brain. If the Intense World Theory is correct, and the brain is already hyper-reactive, then this could just accelerate autism. We have a grant now to study this for the Swiss National Science Foundation. We hypothesize that you need an environment that is filtered from surprise. Surprise can be painful. You can’t easily undo the pain. Memories shape your life. normally, it is difficult to undo them, but for an autistic it is much more difficult to forget. The other problem with Autism being listed as a form of mental retardation in the DSM is that it directs the way scientists research the problem. For decades, they have just been looking for deficits. So, the biggest impediment to Autism is the way it is classified in the DSM. This should change.”
So what do you think of ABA as a recommended therapy during early intervention?
“It can be very dangerous and irresponsible. ABA is for mental retardation. Evidence points to the fact that ABA could be very dangerous for autistic children. We don’t have proof yet, we don’t have an animal model, but the risk is very high. From our analysis of it, ABA, especially in the early phases, the critical developmental stage of from birth until about 5, is very dangerous. You cannot know the intensity in which these children see the world and they are seeing things you can’t see. There is a hyper emotionality. ABA at an early age is definitely a no–no.”
How do parents facilitate the transition from this early phase of a filtered environment to the real world?
“The main critical periods for the brain during which time circuits form irreversibly are in the first few years (till about the age of 5 or so). We think this is an important age period when autism can either fully express to become a severe handicap or turned to become a major advantage. We think a calm filtered environment will not send the circuits into hyper-active modes, but the brain will keep most of its potential for plasticity. At later ages, filtered environments should help calm the autistic child and give them a starting point from where they can venture out. Each autistic child probably will first needs its own bubble environment before on can start mixing bubbles. It should happen mostly on its own, but with very gentle guidance and encouragement. Do all you would want for your child ….but in slow motion…let the child set the pace…they need that control to feel secure enough to begin to venture off into any other other bubbles.”
Given that Autism is not a psychiatric illness, that it should not be in the DSM to begin with, but rather is a difference in neurology, what do you say to psychiatrists who are coming up with theories that people then believe as though these theories were fact?
“It is very difficult. There are lots of theories , not so many facts. Theory of Mind is a deficit model. I think it’s been a very distorted interpretation. When we first came out with the Intense World Theory people were quite opposed to it. But now people are starting to move away from the deficit model.”
Your son is Autistic?
“Yes, he is now eighteen years old, living in Israel. The opposite of what people tell you about autism, he is so emotional, he feels so intensely. The smallest thing happens, he is mortally wounded. He doesn’t know how to organize himself. He has hyper memory.” Henry: “I’m pretty much also autistic. I learned all kinds of tricks, all kinds of strategies and I was able to develop tricks.”
It seems a great many Autistic children also have GI issues. What do you say to that?
“When you alter something in the brain it alters the communication in the body. It is very difficult to separate them. All of these things could be secondary to a neural insult.”
What about diet?
“Some respond better to diet than others. Some may be very sensitive to diet, not necessarily because of their autism. Allergies can affect all people. A diet can help the symptoms of autism if that is a stressor. You need to lower the stressors, diet, sleep, all those things are stressors, combined with their sensory overload it’s going to exacerbate everything. These aren’t treatments for autism, they are things that can place stress on an autistic child.”
What do you say to the parent who is considering drug treatments?
“Drugs are being given by doctors who have no idea how the neurons are affected. We are living in an illusion that we can easily treat brain disorders. The human brain project will change everything in the way we think and treat autism.”
Care to weigh in on the ongoing vaccination controversy?
“There is no evidence to support the connection. The idea of toxic effects after the first trimester and the idea of toxic effects after birth seem very unlikely. Parents should not avoid vaccinations. I think the insult has to be in utero. The first trimester is the danger. Avoid anything extreme, no extreme stress. That should be taken as a black out period for women from the moment they know they are pregnant. Stay calm, sleep well, eat well. All we can do is guess.”
Given the intensity of an Autistic child, how can we help manage their environment?
“In the early phase of the child’s life.. Repetition is a response to extreme fear. The Autist perceives, feels and fears too much. Let them have their routines, no computers, television, no sharp colors, no surprises. It’s the opposite of what parents are told to do. We actually think if you could develop a filtered environment in the early phase of life you could end up with an incredible genius child without many of the sensory challenges.”
Kamila Markram
Henry Markram
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This is wonderful, thank you so much for sharing!!
Thank you Jules. It was a fascinating conversation. Much of it I had to cut as we were all talking about our own lives personally and “off the record” but these were the main points.
I have mixed feelings about some of what they say but I am glad to hear someone with a Dr. in front of their name say ABA can be dangerous. Have met too many products of intense ABA and they are far more damaged having been turned into a compliant robot then they started out as.
I do believe in behavioural interventions but they need to take the whole person into account and although it is anti-behaviourist to say as much take what is known of neurology seriously. Very strict behaviourists only focus on the behaviour and that behaviour having once been labelled by someone without clue as something bad about autism then has to be eliminated.
I took a lot of behavioural psych but even though our professor insisted we adhere to behavioural notions in his class he was well aware of the importance of the other branches of science. I remember once he was saying how he had worked with a high functioning child for a number of years to reduce autistic behaviour in school. It was all deemed a roaring success and the professor came across his client engaged in some heavy duty hand flapping around a corner one day. In class he posed the question was the client still autistic. I am sitting there with autism and a near perfect GPA and want to scream of course but the correct answer in the context of behaviourism is that he isn’t as the undesirable behaviours no longer occur in the targetted environment.
The implications of that for those who are very die hard are staggering. I still 24 years after taking that class sometimes wonder about that kid. Did he wind up ashamed to be autistic? Did he reclaim his right to do what he needed to do to cope? Does he deny he has it now because he was cured and so doesn’t have any explanation for a trillion things about his life that must seem odd?
Even the most well meaning parents I have met can fall into the trap of looking at something their kid does as not useful because of the label that has been applied. If you want to view approaching the same person over and over again while saying the same words as perseverative versus as the child initiating social contact on an issue of shared interest that changes the exact same behaviour a lot.
There are so many examples of what you cite here. This last particularly struck me. How we use the word perseverative to describe a repetitive behavior by someone who is Autistic and yet, hours of video playing is a “habit” in a NT child. There are countless examples of this kind of thing. Autistics are said to lack theory of mind and yet shelves of any book store are filled with self help books speaking to just this with married couples who appear to be under the misperception that they should intuitively “know” what their spouse wants and if they do not they wonder whether this means they aren’t in love with the right person!
I could go on and on but there are too many examples to fit in one comment.
Interesting about the professor. Horrible.
Reblogged this on Moonside and commented:
This has always been my gut feeling about Autism and, to some degree, Asperger’s Syndrome.
Mine too! I so agree.
I’m of course, conflicted about what they said about ABA, but I also understand why they said it.
ABA, to use Landon Bryce’s analogies, are as strong as medication or bleach, which is why ABA “works” to “change” behavior. Thus this isn’t a treatment you “throw” at a child without very careful deliberation and thinking, and certainly *never* without a qualified and talented practitioner who cares about the child *as a person*.
In a way, I’m comforted by the fact that because my child was diagnosed “late”, he’d started receiving ABA older than many of his peers who had been diagnosed earlier. We started ABA 6 months shy of what the Markrams said as “dangerous before 5 years old” as intervention for very young children. My little one has already formed some strong ideas of what he wants and how he wants it, and he clearly has his own agenda.
I’ve seen the “intense world” theory the Markrams propose at work when my child was very small. He has very strong and clear responses to music, as an example. But it’s not the whole song, or every song, only particular sections of certain pieces where we we’d identify as a “climax” or crescendo of the piece (not a musician and I’m groping at words.) The “Taps” musical piece never fails to make him dissolve into tears — even when he was as young as a year old. He responds appropriately to the nature of what is used as a funeral processional piece.
What I wish is to learn more about the transition between this early phase of filtered environment to “the real world out there.” Let’s face it, our world is increasingly chaotic and over-stimulating — for those of very young children who choose this path of allowing their children security in routines and behaviors that stabilize their sense of security while their neurology develops, how do parents facilitate the transition process? Or does it “happen” on its own?
Hi Jane, With your permission I will ask the Markram’s your question. They are away until the first week of September, but perhaps they will answer this question when they return.
yes please!
I agree that autism definitely does not belong in the DSM. It is interesting that autistic kids probably have a higher collective average IQ than the researchers who study them. I like the Intense World Theory a lot. I think that NTs are affected by the “intense world” too, but they are less aware of it because their brains more easily filter out painful or harmful stimuli, even though they are still affected by it, whereas autistic brains are unfiltered. For example, NTs don’t notice pollution in cities as much as autistics do, but NTs are just as likely to die from it whether they notice it or not. And just because NTs don’t seem to notice noises, their brains still perceive those sounds and they are probably distracted by it whether they are consciously aware of it or not. I would rather have an unfiltered brain that allows me to be in constant awareness of my surroundings.
“It is interesting that autistic kids probably have a higher collective average IQ than the researchers who study them. ” I have to tell you I laughed out loud when I read this, so true! And this idea that NTs have a filtering system that may serve them well in being able to focus in a noisy, smelly room, it also means they are filtering all kinds of other things that Autistics may find extremely pleasurable.
As a person with Aspergers, I find Intense World Theory matches my personal experience much more than Theory of Mind (which I think is bogus). It is my feeling that the Autistic mind is hard wired without filters, so we have much more information coming in, and become overwhelmed by it.
“Repetition is a response to extreme fear. The Autist perceives, feels and fears too much. Let them have their routines,…” Repetition & routines enable me to have a sense of control over my life. They also allow me to focus on one thing at a time, acting as a filter for all the stimuli coming in.
Change is really difficult because it disrupts this control I have over my world. A good example is going to a restaurant. I prefer to have time to look at the menu ahead of time online so I can make a choice before I get there. Menus & too many choices overwhelm me. But if you change the restaurant at the last minute, it completely throws me into a panic. Choosing is difficult for me, especially if I feel everyone else is waiting for me.
But I have to say that I don’t want control over things to be a ‘control freak’ and control others. I want control to most of all protect myself and make any social interaction with others easier on both of us.
But there are times when it’s nice not to filter anything and just take it all in and be immersed/overwhelmed by the stimuli, but only if you feel ‘safe.’
“But I have to say that I don’t want control over things to be a ‘control freak’ and control others. I want control to most of all protect myself and make any social interaction with others easier on both of us.” This is EXACTLY what I see with Emma. Exactly. She isn’t trying to control things out of some desire to dictate, it is (I believe) done out of fear and to protect herself.
Thanks so much for you comments. Really loved reading everything you wrote.
fab
Reblogged this on wincharles.
This is fascinating! I’ve always felt my little guy feels SO intensely, as if wounded by emotions on a physical level. As a toddler, if we gently redirected Max with words on something, he would be devastated, as if we had hit him. His responds either with intense emotion or by shutting down. Thanks for sharing a new theory that fits on many levels.
Hi Alicia! Your reaction is much like mine, I think. I read the Intense World Theory and it was like the world lit up. I showed it to my husband and he felt the same. It was our “aha” moment!
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A Link and quote below from another interview with the Markram’s from the Wrongplanet website that discusses the potential in further research to treat the disabling impacts of Autism is provided.
As a person on the spectrum the Markram’s description of Autism fits well within the parameters of my experience of autism, but not all individuals diagnosed with Autism report they experience hypersensitivity to environmental stimulus. Hypo-sensitivity to environmental stimuli is a problem as well for some.
It’s worth noting from the quote below that while the Markram’s do not believe Autism is a psychiatric illness, they theorize that epigenetic insult potentially spins the development of the brain into a “nightmare configuration” and their aim in further research is to control this by isolating epigenetic factors, controlling those agents of insult during pregnancy and after pregnancy, and developing effective drugs and treatments to dampen down uncontrolled hyperfunctional components.
Their best advice and most natural intervention from above is: “let them have their routines, no computers, television, no sharp colors, no surprises. It’s the opposite of what parents are told to do. We actually think if you could develop a filtered environment in the early phase of life you could end up with an incredible genius child without many of the sensory challenges.”
This is similar to the issue that Lady Greenfield from the UK addressed and was summarily dismissed when she referenced research that these technological issues of over-stimulation might have something to do with problems associated with Autism Spectrum disorders.
http://www.guardian.co.uk/society/2011/aug/06/research-autism-internet-susan-greenfield
Basically, the Markram’s are suggesting that epigenetic insult during pregnancy and environmental over-stimulus during childhood, is what can potentially result in the painful sensory symptoms that some individuals on the spectrum endure. They are not just accepting Autism as a difference they acknowledge the difficult symptoms, and are seeking to prevent and/or treat those difficult symptoms, to provide individuals on the spectrum the opportunity to reach their full potential in life.
It’s also worth noting, as linked below, to gain a fuller appreciation of the value of autism research, that the NAAR Autism research organization that merged with Autism Speaks, helped provide the Markram’s with an opportunity to pursue research related to the Extreme World Theory through a 96.7K grant, that was originally based on Markram’s research on the neurology of mice.
http://www.autismspeaks.org/science/grants-program/research-we-have-funded/2001-awards-naar
http://www.wrongplanet.net/article419.html
“For research, we will isolate various agents that can induce epigenetic insult of the genome and may even learn how to use these agents to guide evolution of the human brain. We will learn which sets of genes are predisposing – lower the threshold of epigenetic insult during pregnancy – so that we can be better informed on nutrition during pregnancy and get ready to raise an autistic child if necessary. We will learn how to gently guide the development of the brain of an autistic child through the critical irreversible periods and avoid traumatic moments that could spin the brain development into a nightmare configuration and preserve the hyperfunctional microcircuits allowing autists to cope with the intensity and pain and express their genious. Nutrients, drugs and other treatments such as brain stimulation, will emerge that can dampen down selectively some uncontrolled hyperfunctional components.”
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