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Intense world theory raises intense worries

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Anna Remington, Uta Frith
21 January 2014

Intense effects: Although the intense world theory of autism is theoretical, the therapies it suggests are real and may be just as likely to do harm as good.

In the past few years, a new theory of autism —the ‘intense world theory,’ proposed by Henry and Kamila Markram1, 2 — has attracted much interest from the popular press. Two welcome features of the theory are that it promotes a more positive view of autism and that the Markrams base it on a biological understanding of the disorder.

It proposes that autism is the result of hyperfunctioning of neural circuitry, leading to both feats of talent and a state of over-arousal. Journalist Maia Szalavitz describes this theory at length in the new online magazine Matter

Although we all yearn for an overarching theory of autism, and the idea is appealing, the theory has thus far received very little academic scrutiny. We know all too well the damage that can result when researchers prematurely release a hypothesis into the public domain — for instance, the unsubstantiated claims of a link between the measles, mumps and rubella vaccine and autism.

Our particular concern regarding the intense world theory centers on drastic suggested treatments for individuals with autism, namely withdrawing stimulation during infancy. The Markrams do not merely hint at such interventions, but explicitly spell them out. Yet if the theory is incorrect, these treatments could be damaging. As studies of Romanian orphans have strikingly shown, insufficient stimulation and impoverished neuronal input in early development are damaging to children’s social, cognitive and emotional functioning3.

So we ask: Where has this intense world theory emerged from? Is it as positive as it purports to be, and what does it mean for autism?

Model rats:

The intense world theory is based on data from two experimental studies using the valproic acid (VPA) rat model of autism. Exposure to VPA, an epilepsy drug, during pregnancy results in reduced social interactions, increased repetitive behaviors and loss of cerebellar neurons in the rat pups.

The Markrams and their colleagues found that the amygdalae and medial prefrontal cortices of these rats are hyperreactive, hyperconnected and hyperplastic4, 5. Their brains show a change in the balance of excitatory and inhibitory nerve signals, and in the efficiency of communication between neurons, which may have significant behavioral effects.

"We know all too well the damage that can result when researchers prematurely release a hypothesis into the public domain."

The Markrams extrapolated these findings to suggest the presence of increased activity in certain regions of the brains of humans with autism, leading to overactive perception, memory and attentional processes. These, they say, are hypercapabilities that all individuals with autism possess. These features manifest as extreme sensitivity to sensory stimuli, elevated fear and over-emotionality. The intense world theory suggests that to deal with this intensity, people with autism tend to shut down and withdraw from the world.

This idea of sensory overload in autism is not a new one, and indeed the American Psychiatric Association recently modified the diagnostic criteria for autism to include unusual sensory responses as a core feature. However, whereas the VPA rat model may demonstrate hypersensitivity, the human data are much less clear-cut.

In people with autism, sensory symptoms appear to vary wildly: from hypersensitivity (strong reactions to sounds, light and touch) to hyposensitivity (failure to orient to sounds, and low sensations of pain) and ‘sensory-seeking’ behaviors (a craving for intense sensory stimulation), as described in a 2005 review of almost 50 years of literature on sensory abnormalities in autism6 and a 2013 discussion of the issue7.

A unifying theory needs to account for all, not just some, observations. We urgently need an exploration of the behavioral features that accompany the neurobiological changes seen in the VPA rat model. Does the suggested hyperreactivity, hyperplasticity and hyperconnectivity lead to enhanced or reduced brain processing? There is currently no consensus on whether increased neural activity facilitates or hinders brain function8, 9.

Savant appeal:

For the autism community, one of the appeals of the theory is the way in which the Markrams criticize ‘deficit models’ of autism and promote autism as a set of enhanced abilities rather than as an impairment. When looking more closely at the intense world theory, however, the picture is not nearly as positive as the commentary suggests. The Markrams describe autism as a constant state of feeling “hungover and jetlagged” and say that it is characterized by extreme fear reactions.

Indeed, they frame all of the ‘capabilities’ as problematic symptoms that need to be tempered before an individual can function meaningfully and demonstrate enhanced abilities. By contrast, other models, such as the ‘enhanced perceptual functioning’ model, describe genuine skills and superior abilities seen in autism10, 11.

So how does the intense world theory affect autism treatment? In their publications, the researchers state that their claims “have to be substantiated in systematic and controlled experiments on human subjects” before others make any predictions regarding treatment2.

However, in contrast to this expressed caution, in the popular press the Markrams call for a dramatic change in the way that clinicians and researchers treat children with autism.

In one such interview they said, “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.”

This is a worrying throwback to the days when researchers implausibly linked parental inaction to autism severity. What’s more, this type of statement at once creates anxiety about having missed the window of opportunity, and unreasonably high expectations. We also note a concern raised by Ari Ne’eman, president of the Autistic Self Advocacy Network, that we should not link the worth of a child with autism to whether he or she has special abilities.

Until researchers have tested the theory appropriately, we urge caution. We need to verify this theory before it can shape our perception and treatment of autism. Once this is done, we may well find ourselves with an intensely interesting proposal. For now, we remain intensely worried.

Anna Remington is lecturer in cognitive science at the Centre for Research in Autism and Education at the Institute of Education in London. Uta Frith is emeritus professor of cognitive neuroscience at University College London.

References:

1: Markram H. et al. Front. Neurosci. 1, 77-96 (2007) PubMed

2: Markram K. and H. Markram Front. Hum. Neurosci. 4, 224 (2010) PubMed

3: Chugani H.T. et al. Neuroimage 14, 1290-1301 (2001) PubMed

4: Rinaldi T. et al. Front. Neural Circuits 2, 4 (2008) PubMed

5: Markram K. et al. Neuropsychopharmacology 33, 901-912 (2008) PubMed

6: Rogers S.J. and S. Ozonoff J. Child Psychol. Psychiatry 46, 1255-1268 (2005) PubMed

7: Pellicano E. Child Dev. Persp. 7, 143-148 (2013) Abstract

8: Rubenstein J.L. and M.M. Merzenich Genes Brain Behav. 2, 255-267 (2003) PubMed

9: McIntosh A.R. et al. Arch. Ital. Biol. 148, 323-337 (2010) PubMed

10: Samson F. et al. Hum. Brain Mapp. 33, 1553-1581 (2012) PubMed

11: Mottron L. et al. J. Autism Dev. Disord. 36, 27-43 (2006) PubMed

Comments

Name: Ani
21 January 2014 - 9:31PM

I agree with the authors that the intense world hypothesis requires much more research and evidence in humans before it can considered a valid theory of autism.

However, I can say as an autistic person that its suggested sensory environments and parenting approaches were two of the most important factors that helped me grow up in a healthy happy way into a high-functioning autistic adult (and autism researcher).

However+1, lemme disagree with the Markrams about the role of repetition in autism. The repetitive behaviors are not necessarily responses to extreme fear. Instead, many of them are simply fun, and that's why some of us do them.

Name: Brenda
22 January 2014 - 9:42PM

Ani,

Can you elaborate on the sensory environment and the parental approaches that were used with you? I am very interested in learning all that I can. Thank you.

Name: Rose
23 January 2014 - 12:15PM

Autistics have been compared to fairies and aliens, thought to be lacking in quintessential human qualities and empathy. To be compared to a Romanian orphan might be a step up!

One thing almost all theories of autism encompass is the autistic's lack; one thing almost all therapies work towards is being "indistinguishable from their peers" and never "comfortable in their own skin". A recent book by a mother, Liz Becker and "Autism and the World According to Matt" shows what tolerance, time, and kindness can do for a severely autistic son who graduated, academically, at the top of his class while still being classically autistic, and mostly non-verbal. He is 28 years old and while still having no semblance of "normal", he is attempting to live on his own in a protected environment. He has always lived in a protected, accommodating environment. I think Dr. Markham is considering no more than accommodation of the autistic child's needs, and while possibly not hitting the mark, I think he is moving thought in the right direction.

Temple Grandin noted her primary emotion was fear, and many autistics would agree that anxiety and fear are debilitating aspects of their disability. For a severely autistic child, the negative emotions, as well as the positive, seems to be magnified.Dr. Markham has no "proof", but his theory deserves serious consideration.To throw the fear factor of "environmental deprivation" only serves to, once again, negate what the behavior of autistic children is trying to tell us.

Name: Emma
24 January 2014 - 6:12AM

I am horrified to think that this research would be accepted as providing 'treatment' for autism. I have Aspergers and I am a happy functioning adult with a family of my own and work.... I did not have the upbringing suggested, which is known to cause developmental delays in most children. Yes less stimuli may be a good thing, but which stimuli? is it the same for all people? there are other posiitve theories such as neurodiveristy!

Name: Rose
24 January 2014 - 6:56PM

Which stimuli? I think the kids could tell you. For many, it is sound.

Many neurodiverse individuals see the "Intense World Theory" as taking into account the disability aspects of autism, giving a logical reasoning for their differences. On this very page, one is led to Dr. Temple Grandin's paper on "Treatments needed for severe sensory sensitivities". http://sfari.org/news-and-opinion/viewpoint/2011/treatments-needed-for-severe-sensory-sensitivities. A quick look at "Whose Planet is it Anyway"...er...I mean, Wrong Planet--a neurodiversity website with over 80,000 members begun by Alex Plank shows many, many of our kind feel it is spot on. http://www.wrongplanet.net/article419.

The Markhams and the Mottrons are loving parents of pretty severely afflicted children.

Name: Rose
24 January 2014 - 7:03PM

http://sfari.org/news-and-opinion/viewpoint/2011/treatments-needed-for-severe-sensory-sensitivity I inadvertantly changed the link to Dr. Grandin's paper. Dr. Grandin's book, "Thinking In Pictures" was my bible for raising my son. It's been different, but without her I would have had no hope. As it is, I can see my son becoming a Mechanical Engineer. If I had lived in the fearful world some experts brought others into, I'm sure he would have had a miserable upbringing.

Name: Ali
4 February 2014 - 9:23AM

Comparing a much founded/studied and open hypothesis to a fraud (measles, mumps and rubella vaccine and autism) is a terrible way to start an article.

I was looking for something related to "intense world theory" and saw this link but reading was painful.

I think you are very right about thinking treatment side of such theory but still to me science is about evolving an idea to next step and it is much about progress and I appreciate it when it is done in plain sight. I think it is responsibility of the media outlets, funding centers to handle such theories with great care and from resource rather than blame the source they didn't confirm when things goes into wrong direction.

Back to "intense world theory" I don't think there could be ever a unifying theory about autism since it is used for very broad spectrum. Yet it is very important for real scientist to try to come up with ideas which could shed light to other people.

Name: Greg Boustead
4 February 2014 - 3:43PM

Ali,

Without putting words into the authors' mouths, I think the vaccine/autism reference was to highlight the potential pitfalls of broadly promoting any scientific idea with little supporting evidence - as a general cautionary note.

Please check back next week for a discussion post featuring alternative views on this topic from other researchers and clinicians in the field, as part of our "Cross Talk" series.

Name: Ali
5 February 2014 - 8:34AM

Greg,

Thanks for update on "Cross Talk" series, I'll be gladly following.

I'm sure you are aware that vaccine/autism reference is mostly accepted as a "fraud" and even the papers are retracted from published status. I'll just link wikipedia since it gives good enough citations to the status for the interested ones (http://en.wikipedia.org/wiki/MMR_vaccine_controversy#Full_retraction_and_fraud_allegations).

Please be sure that I respect people looking for opposite thoughts, however that must be even a finer work than creating/working hypothesizes and I'm sure you'll do a great job.

Name: Derrick
8 February 2014 - 11:12PM

Being autistic myself, I don't see any reason to be worried about the Intense World theory at all.

And since the article appears to be written by professionals in the field of neuroscience...what about actually getting their facts straight before posting? Citing the Romanian adoptee studies? Really? Basically, the Markrams are advocating a calm environment for autistic children. And the authors of the article are comparing this idea to a study about children who suffered from severe deprivation, malnutrition and sitting in their own feces all day?
Is that what you call serious journalism? Give me a break. Embarrassingly bad effort.

It's also quite disappointing that the authors rely on eliciting negative emotions against the theory by overblowing concerns about oh so bad treatment consequences (without giving any real facts supporting their view) instead of making concrete arguments against the intense world concept.

Name: Steph
18 April 2014 - 5:33PM

I agree 100% with Derrick on this. As someone with an ASD and who is high functioning, I believe the Markrams are onto something and that their research will completely change the field. Of course, the Markrams predicted the issues that would be raised against their research and judging from this article they were right on. Also consider that a lot of money has gone into autism research and for a theory to arise that contradicts these past studies and seems to say that the experts have been going in the wrong direction...well of course they will argue against the Markrams theory, in this day and age money talks. No matter how on target The Intense World Theory is, it will be fought, too many egos are at stake. The fact that fear tactics are being used against this theory should be a big red flag. Pay close attention to this and let's make sure that the Markrams do not suddenly and mysteriously vanish off the face of the earth.

Name: Mary
14 February 2014 - 5:30PM

I was diagnosed with Asperger's at age 58. I studied cognitive neuroscience as an undergraduate. A scientific article doesn't compare the loving, quiet environment proposed by the Markhmas to the deprivation of a Romanian orphan. It took me over a year to find the Intense World theory of autism, and for me, by far, it made much more sense than anything else I had read. I keep applying the insights from the article directly to my own life with good results. I look forward to the further postings about this. I raised a happy son, who is now 21 years old. I honestly do not know if he is on spectrum or not. He needed tremendous amounts of time alone when he was young, and was very visual. I gave him that time alone, and a rich environment in which to get to know himself. He wanted to manipulate things with his hands and I gave him many things, starting from a very young age. He wanted to be held a lot as an infant, and many of us contributed to be sure this was taken care of, when I was sometimes overwhelmed. He wanted to be attended to, listened to, and loved. I realize autism is a spectrum disorder and I would never propose to an autistic parent how to raise their child. I am simply reporting that the theory has been more applicable to my own life, since my diagnosis, than any other, and that I, in retrospect, had a child with many sensory issues which I respected and supported.

Name: Dan
19 February 2014 - 4:36PM

I think we should explore the theory, but on a broader scale than autism. To start with, I would define a human as "an ape-like creature that develops a model of the world in its brain, and upon physical maturity, moves its ego inside the model, avoiding the actual universe at all costs".
Most people live in their own world, whether intense or not. NTs (neurotypicals) have a 'full' model, including layers of insulating emotional interactions and memories that protect them from stimuli. It is the completeness of these layers which enables active interfacing with other people. The spectrum of human interactive and communicative behaviors is both a physically qualitative function and a mental quantitative one. A person must have enough fully participatory physical neurons and a complete 'shape' of a model of the world in order to be considered "normal", but there is no 'perfect'. Some people will be socially normal and have hyperactive world areas of genius or motivation. In other words, the overall world model is dependent on physical brain functionality as well as environmental factors.
Sometimes, these overlap when various factors like diet, disease or stress affect physical or chemical balances, or trauma causes damage.
There are specific areas of the brain that might be more prevalent, but it is the overall ability to build a world model and maintain its integrity amid all of the other world models (insulation and communication balance) that can be said to envelop the range of neurodiversity. We are never going to make a perfect human, but we can see where not to screw them up. My short list is
abuse/bullying
food
pollution
ignorance

Name: Sue
25 February 2014 - 5:32PM

The Romanian orphanage comment is a bit much. I'm pretty sure the Markhmas meant something more akin to Stanley Greenspan's Floortime approach where you tailor sensory stimulation specifically to the child so they are able to engage and attend and therefore climb the developmental ladder. A fantastic example of this is written in the book The Boy Who Loved Windows: Opening The Heart And Mind Of A Child Threatened With Autism.

Name: don't give up hope
28 February 2014 - 2:35PM

https://www.youtube.com/watch?v=Gxan95vKOrE&feature=youtube_gdata_player starting @ 4:21....how to treat an autistic kid.

Science "experts" depend on fear to keep their advantage over parents. How I wished I had never met an expert, and continued to trust my "mother's intuition" like Christine Barnett. Time to take back our kids.

Name: Noisy Brains
11 March 2014 - 11:09AM

http://journal.frontiersin.org/Journal/10.3389/fninf.2013.00037/full

Name: Franco
1 April 2014 - 3:47AM

Neural circuits can be overloaded because of any of two reasons: hyperfunctioning or reduced bandwidth. The former is described by the "intense world" theory, the latter by the "long distance underconnectivity" theory. Both of them are valid, each for a different subset of the ASD population. I am aspie, and long distance underconnectivity explains each and all of my traits.

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