Archive for September 2008
I want to describe a bit more what it’s like to have asperger’s syndrome.
It’s not much fun having the sensory amplification of autism, particularly when it’s severe. It’s sort of like having a permanent migraine or a hangover. When you see autistic kids who won’t take their fingers out of their ears, it’s because everything is so loud to them that it’s actually painful. Children who bang their heads will sometimes voice that they were in so much pain the only thing that helped was hitting a wall.
The most inaccurate description of autism’s sensory disturbance I’ve heard was from that silly GAPS diet ‘doctor’. She described autistic’s brains as being ‘clogged with toxicity’ and ‘all this sensory information cannot be processed properly, it turns into a noise, a mush’.
There is nothing mush-like about it. It’s just someone turned the volume knob all the way up.
I’m sensitive to light. I always squint on sunny days. Bright lights hurt my eyes. I hate fluorescents. I don’t like dark either, and often switch on bulbs on a grey day just to cheer the place up a bit. Strobe lights and flashing lights bother me. Imagine if you had a hangover or a migraine, wouldn’t those things bother you too?
Loud noises make me yelp in pain. Quiet noises are highly irritating. I am like Captain Hook, I can’t stand ticking clocks. The high pitched whine of electronic equipment drives me crazy. On the plus side, I can tell from across the other side of the house if someone is raiding the snack cupboard or the dog is up to mischief. I even know what the dog is doing – if he’s quietly tossing socks in the air or having a sneaky gnaw of his bed, I can tell. I have a perfect ear, so I could have made a good musician. However, because I don’t exercise my vocal chords by making conversation, I wouldn’t dream of singing in public. Unlike most of the applicants to the X-Factor, I can hear the bum notes I make when my vocal chords misbehave!
You can learn to filter out noise as long as it’s not above a certain level. I’m often in that state, switched off to TV or radio noise. Some noises I can’t filter out. Music is a problem for me. I can’t work and listen to music, because the music takes over my brain. I do very badly in nightclubs and always have. As a teenager I used to put my fingers in my ears on the dance floor and get laughed at because of it (‘you geek’). I often found some quiet corner to go sit in if I could. I’d close my eyes and think ‘please let this be over soon’. I don’t think I’ve ever been to a nightclub and not thought at some point in the evening ‘please let this be over’ because of the noise and stress of people. I tend to zone out and start acting weird or sulking, because the music overwhelms me and interferes with my ability to think.
I have problems distinguishing voices from background noise, and it is normal for me to be unable to follow a conversation in a busy pub. I tend to smile and nod and hope people don’t ask me questions. I also have problems with accents or with people I haven’t met before. I often mishear things, usually if I am doorstepped, or I am talking to a checkout assistant. Sometimes someone can say something, and it sounds like gibberish. Usually my brain forms it into words that weren’t said and don’t make sense. I’ve described this as ‘aural dyslexia’ before, a term arrived at independently by many with asperger’s syndrome to describe what they experience. The official name for this is CAPD, Central Auditory Processing Disorder.
The sensation of drunkenness does not make me feel relaxed and carefree, unless I am so drunk I am about to fall over. Drinking brings on a variety of unpleasant physical sensations, including nausea, after around two or three units of alcohol. I experience a feeling of dislocation from reality, everything gets louder, which contributes to the inability to understand conversation. Various of my body parts begin to ache or hurt. My legs start to feel like lead and I become incredibly fatigued and whiny. This doesn’t make me a great partygoer.
The skin sensations are the worst problem. Since being a child I have cut out all the labels in my clothing because they scratch and irritate so much. I couldn’t wear wool until after I went on the Atkins diet a few years ago (which helped clear up a lot of my random skin rashes too). Wool does not feel soft to me. I still itch from wearing it, but I am able to filter it out better. Now I’m on the failsafe diet, I feel proud that I can wear cashmere at last!
I hate synthetic clothing that has polyester in it, it always feels so cold to wear, like it’s sucking the heat right out of my body. I get annoyed by the amount of knitwear that contains polyester, which lends a ubiquitous cheapness to all highstreet clothes. What is the point of wearing knitwear that doesn’t keep you warm? I’m extremely temperature sensitive. If I sit around I get very cold, if I go out and exercise, I practically have to strip off all my clothes as soon as I get in the door because I can’t bear feeling too hot either. I used to think this was a thyroid problem. It’s not, it’s a sensory issue common to autism and also fibromyalgia. It’s something amplified horrendously by food chemicals. I complain a lot less about being cold since being on the failsafe diet, but I still drive my partner crazy with the central heating.
Sometimes someone’s physical presence touching me can overwhelm me so much that I start squawking and yelling really loudly – such as if my partner tickles me with his beard or hugs me unexpectedly, or the dog jumps on me and digs my lap. It’s an effective if alarming way to get others to back off, though my poor partner’s eardrums tend to suffer! This squawking, yelling behaviour is one of those little things autistic kids do when they’re touched and they don’t like it. It’s automatic, I can’t help it. I sometimes ponder the morbid possibility of getting injured during a mugging, simply because I would be incapable of controlling an automatic yell if someone touched me.
As I mentioned, these same sensory disturbances are also a feature of fibromyalgia. If you compare the sensory disturbances of both, you’ll be astonished no one has made a stronger connection. I think fibromyalgia has a couple of distinct sensory issues – the dreaded sensitive ‘bruised/burning’ skin patches, and the tender points. It’s not much fun having those either. Poke me in a tender point and you’ll get squawked at pretty loudly. My tender points never go away, although I only get prickly skin patches when I cheat on my diet. Salicylates seem to be the main trigger.
What seems crazy to me is that autistic people are believed without question, yet people with fibromyalgia are still characterised by the medical profession as malingerers, Munchausen’s sufferers, hypochondriacs and drug seekers. Why the cognitive dissonance? Neither syndrome is more or less objective than the other. I have both asperger’s syndrome and fibromyalgia, lucky me. As far as sensory perception goes, you can imagine how these two don’t double up too well for me. Both syndromes have the same roots. I’m sure people with fibromyalgia have some similar brain differences, especially to the amygdala and insula (the seat of many emotions). I suspect triggering infections might cause some changes to the brain.
I’ve wondered for some time that part of the reason I always have some physical complaint or I’m having a food reaction is because I am very sensitive, and this very sensitive state also makes me more sensitive to pain. I think I feel things physically that wouldn’t even register in other people. I get pain in my DVT leg, I get gout in my big toe. I have chronic back pain as soon as I deviate from my diet. I think this is because I have enhanced pain perception, not because I actually have anything physically or metabolically wrong, though muscle tension is involved in the back pain. In the case of my back, I think there’s a feedback mechanism. The muscles get very tense which causes pain, which causes further tension. My back makes a lot of physical cracking noises, but the origin of the problem is in what my brain is telling my back to do. The pain problem has puzzled me for a while, because I know I only have mild issues with endorphins/opioid-like peptides (which can be a big problem for others, especially redheads). It seems like the pain is probably more an integral feature of the heightened sensory perception in autism than anything else. I feel like I have nerve endings where nerve endings shouldn’t even exist.
Then there are the emotional issues.
Autistics are often described by the ignorant as being ‘soulless’, ‘lacking in empathy’ or like automatons. I think these people don’t even know what autism is. Autistics have very strong emotions. If you read autistic and aspie blogs, you’ll find they are always freaking out about something, feeling miserable, feeling happy, feeling angry, feeling overwhelmed.
I know I feel things very, very deeply, I get hurt very easily, and I am afraid of people. I do have strong feelings for other people, but because I can’t/won’t/don’t interact with them due to the fear/shyness/stress response, I can find it hard to predict what they will do or understand them fully, often resorting to false assumptions that they are ‘like me’ in their attitudes in some way that they are not. Before the age of twenty-two, it didn’t even occur to me to try to see the world through someone else’s eyes. Learning to empathise was a process I went through consciously, after I developed an unsuitable crush on a boy I was working with and had to use lots of brain power to try to figure him out (it didn’t work, it was a disaster). The ‘theory of the mind’ or ‘mind-blindness’ is just something I was slow to learn my way through because I didn’t interact with people, and I found other topics more interesting. I don’t think it’s central to the origin of autism, just a side-effect of it.
Autistics have good memories. Rather like elephants, we never forget. This is particularly true of emotional memories, usually negative ones.
Children act like packs of hyenas. You can imagine how unpleasant it is for an autistic kid who is bullied at school because he or she is singled out as weird and different. It’s bad enough any kid getting bullied, but autistic kids are hit very hard because they are very easily hurt and are then effectively tortured by those negative memories. Autistic kids don’t have a support network of friends to help them deal with bullying and put it behind them emotionally. Autistics can become very bitter and twisted when assaulted by those memories. This is why I am a separatist. I don’t believe in teaching autistic children in mainstream schools. Mainstream schools are awful places for autistics. They will never not be awful places. They set autistic children up for failure and humiliation. Children will never change, they will always be vicious little pack animals who prey on the weak. Being autistic in a mainstream school is rather like being fed to the lions.
Even as an adult, if people hurt me, I find it very hard to forget what they have done or get over feeling hurt when I think about them. When I fall in love, I fall in love very deeply. This makes me rather fragile. As a child I learned that it was better to stay away from people who were obviously different from me or who had the potential to hurt me. I could never sleep around like some people can, it doesn’t even compute. I am very selective about who I am friends with, and I’m always rather puzzled by the half-aspie people I know who aren’t selective enough and who are friends with people who obviously aren’t suitable for them. I’m very protective of my emotional state (I need to stay calm for my sanity), and because I am hurt easily and deeply, I do drop friends who hurt me so they can’t do it again. Sometimes I am too emotional to even explain myself. When I cry I literally become autistic. I rock, I withdraw, and I become incapable of speech, and this can have the unfortunate effect of perpetuating arguments and misunderstandings.
Like most autistics, I’m incapable of lying, probably because the cognitive dissonance between what I feel and what I say would be too overwhelming for my brain. It took me thirty years to learn to give or receive a compliment, because of what I feel when I do so. Giving compliments makes me feel overwhelmed and vulnerable and embarrassed and afraid, like my heart is about to stop. When I give compliments, I genuinely mean them, the same when I ask people how they are.
I don’t understand people who have the ability to be fake or two-faced or lie to people, though I’ve often been a victim of them. Who are these people who can ‘network’ and ‘work the room’ and schmooze around for the sake of their career? I just decided not to go to an important conference last weekend because the noisy interaction and the schmoozing and the fakey-friendship behaviour you see at these places would have been too much for me. It drives me crazy when someone talks behind another person’s back and then acts all sycophantic to their face. I do bitch about people when they do things to annoy me, but I am only ever civil to their face, I don’t try to be two-faced about it, and I don’t use my mutual hatred of someone to cement a bond with someone else. Those kinds of bonds are very shallow, and you are likely to find yourself on the receiving end of the same kind of behaviour.
The two sides of the brain deal with different aspects of language. One side deals with automatic language and clichés (‘hi, how are you?’, ‘lovely weather’, ‘thank you for having us’), the other side with conscious language. The side of my brain that deals with automatic language appears not to work. I still have to consciously think about mundane and obvious things to say. Smalltalk does not come easily to me. Usually the silent running commentary in my mind is saying, ‘that sounds stupid/fake/clichéd’ at the same time.
I am a bit of a cranky old grump. I am a bit like Dr. Gregory House or Chloe O’Brian – though I assure you I’m not quite that rude and I never say things deliberately to hurt people. I don’t suffer fools gladly and I’m often blunt. If you’re wrong, I’ll tell you so. I’ll often be misinterpreted for this. I am far more interested in ideas than in people. I don’t say things to get the better of someone or to put them down, I say things because they are right, and ‘right’ things ought to go on record. I try not to correct small mistakes, but I do have that tendency. I am a perfectionist. I sometimes get into a tangle with friends who think I am talking about them when I am not talking about them, or I’ve picked up on an opinion of theirs that I don’t like and they take criticism personally.
Because I’m not that social, I act as an observer, studying the things that people do from outside of the group. People – mostly teenagers and young adults – behave very irrationally. They will often make a huge fuss over something small, and really what is going on is they are trying to assert themselves in the pecking order of the group. They try to gain friends and influence by picking on weaker members of the group, rather like animals do. It can be very curious to watch, rather like The Emperor’s New Clothes. The illusion of there being a real issue to fight over only remains as long as the members of the group really believe it is what they are fighting over, because they wouldn’t admit the truth to themselves as this behaviour is immoral. It’s rather like watching Big Brother. Everyone picks on a weaker housemate to cement group ties and social hierarchy. Rachel Rice got picked on and bitched about all the way through the UK series of Big Brother this year, just so the other housemates could feel closer to each other and higher up the pecking order. Most of the viewers could see what was really going on, which is why she won the show. A shame most people can’t actually see it when they are doing it themselves. Aspies would probably lead much happier lives if they did.
IMAGINE a world where every sound jars like a jackhammer, every light is a blinding strobe, clothes feel like sandpaper and even your own mother’s face appears as a jumble of frightening and disconnected pieces. This, say neuroscientists Kamila and Henry Markram of the Swiss Federal Institute of Technology in Lausanne, is how it feels to be autistic.
According to their “intense world” hypothesis, all of autism’s baffling and sometimes incongruous features – social problems, language impairment and obsessive behaviour, sometimes allied to dazzling savant abilities – can be explained by a single neurological defect: a hyperactive brain that makes ordinary, everyday sensory experiences utterly overwhelming.
If they’re right – and the idea is generating a deal of interest among autism experts – the husband-and-wife team could be on course to add a significant new theory to autism research. “It is a very compelling idea,” says neurobiologist Asaf Keller at the University of Maryland School of Medicine in Baltimore, who has arranged a symposium to discuss it at November’s Society for Neuroscience meeting in Washington DC.
Recognition of sensory disturbance in autism goes back as far as the 1940s, and today it is widely seen as a fundamental aspect of the condition. “There is a lot of evidence for sensory hypersensitivity,” says Simon Baron-Cohen, director of the Autism Research Centre at the University of Cambridge. He notes that hypersensitivity can affect the vision, hearing and touch of people with autistic spectrum disorders (ASD, see “Autism basics”).
“If you talk to practitioners, invariably they will say, ‘I’ve never seen a child with autism who doesn’t have sensory problems’,” adds Keller. “There’s a strong correlation, maybe 100 per cent.”
The Markrams, however, are the first to put sensory overload at the heart of the condition. “Our hypothesis is that autistic people perceive, feel and remember too much,” says Kamila Markram. Faced with this blooming, buzzing confusion, autistic infants withdraw, with serious consequences for their social and linguistic development. Repetitive behaviours such as rocking and head-banging, meanwhile, can be seen as an attempt to bring order and predictability to a blaring world (Frontiers in Neuroscience, vol 1, p 77).
Most theories of autism assume the affected person has a neurological deficit of some kind – that some part of their brain isn’t working properly (see “Five leading theories of autism”). According to the Markrams’ theory, though, the brain isn’t underperforming but overperforming.
Along with colleague Tania Rinaldi, they developed their hypothesis largely from work on an animal model of autism, plus human brain imaging, autopsy evidence and the subjective experiences of people with ASD, including Henry Markram’s son who is borderline autistic. “That’s the curse of having parents who are neuroscientists, they are constantly analysing you,” says Kamila Markram. She has observed the boy’s intense fears and anxieties and his struggles with oversensitivity.
For the animal work they used an autism model called the VPA rat. This model is based on dozens of case studies of children whose mothers took the anticonvulsant and mood-stabilising drug valproic acid (VPA) while pregnant. A frighteningly high proportion of these children ended up with some form of autism – around 10 per cent, compared with some 0.08 per cent of the general population.
In the mid-1990s, researchers working on the adverse effects of VPA tried exposing rat fetuses to the drug and found that giving it on the 12th day of gestation – equivalent to the early part of the first trimester in humans – caused major damage to the rats’ developing brainstem. This has far-reaching effects on later brain development and results in socially withdrawn behaviour that looks eerily similar to humans with autism. The VPA rat is now an established animal model of autism.
When the Markrams examined the brains of VPA rats in minute detail, they found that they didn’t just share behavioural traits with autistic humans. Their neuroanatomical changes were similar too.
One of the most replicated findings in autism neurology is abnormal brain growth. At birth the brains of autistic children are small or normal sized, but grow unusually quickly. By age 2 to 3 their brain volume is roughly 10 per cent larger than average. Human autopsy findings by Manuel Casanova of the University of Louisville in Kentucky suggest that part of this extra volume consists of structures called minicolumns in the brain’s outer layer, the cerebral cortex.
You can think of minicolumns as the brain’s microprocessors: clusters of around 80 to 120 neurons that crunch basic neural information, including perception, memory and so on, before it is somehow integrated into a whole. They are the smallest independent processing units in the cortex.
When the Markrams looked at minicolumns in VPA rats they saw some striking changes similar to the human autopsies. First and foremost the minicolumns were unusually abundant. They were also extraordinarily well connected. “Using a technique for recording directly from neurons, we found consistently, over many experiments, that these circuits are hyperconnected,” says Kamila Markram. Each minicolumn neuron in a VPA rat has up to 50 per cent more connections than normal and this causes them to be hyper-reactive, firing more readily when stimulated by an external electrical current. The circuits are also “hyperplastic”, meaning they form connections with other neurons more readily than normal.
Taken together, hyper-reactivity and hyperplasticity mean that minicolumns in VPA rats (and presumably in autistic humans too) have a higher than normal capacity for processing information. And this, say the Markrams, is autism’s fundamental problem.
Take sensory disturbance, for example. Excessive information processing in the microcircuits that handle incoming data from the senses leads to exaggerated perception, producing extremely intense images, sounds, smells and touch, the Markrams claim. Hyperactive microcircuits, meanwhile, could prove difficult to integrate into a whole, so perception would be highly fragmented. This sensory overload causes autistic kids to withdraw from the world, or pay excessive attention to small fragments of it. “It’s what anyone would do if they were embedded in a welter or cacophony of unpredictable events,” says autism researcher Matthew Belmonte of Cornell University, Ithaca, New York.
The hypothesis also provides an explanation for the three core deficits of ASD. Social problems, for example, are a direct consequence of children withdrawing from the world during critical developmental windows. Because the developing human brain requires repeated exposure to relevant stimuli at the right time to develop properly, early avoidance of social stimuli can have a devastating effect on a child’s social development. “They don’t learn because they don’t interact,” says Kamila Markram.
Similarly, children whose exposure to language during infancy is inadequate will have impaired language skills all their lives. When almost every sensation is overwhelming it’s hard to socialise at all, let alone speak.
Hyperplasticity, meanwhile, could account for repetitive behaviour and the compulsive desire for routine in people with ASD. Plasticity underlies learning and memory, so hyperplastic brains could be primed for what the Markrams call “hypermemory”. “They build very strong memories,” says Kamila Markram. “So strong that you establish a routine that you can’t undo: you are stuck on a track.”
At the same time, however, by locking them into specific narrow interests and compelling them to practise compulsively, hypermemory may be what drives some autistic people to develop savant skills. This appears to be how musical, artistic and mathematical savants develop their talents.
Unfortunately, if their focus is too narrow, savant-like skills can appear to be the exact opposite. “If your focus of attention becomes too local then you may become an expert on such a tiny system – the wheel of your toy car, say – that you end up with very little demonstrable knowledge about other, wider systems,” says Baron-Cohen.
Wired for fear
Another crucial element of the new hypothesis is that VPA rats also have hyperconnectivity and hyperplasticity in the amygdala, the almond-shaped brain structure where memories of fear are made and stored, which looms large in many theories of autism. VPA rats learn to avoid frightening situations more quickly than other rats, readily fear non-threatening stimuli, and are quick to generalise fear from one situation to another. They also have a much harder time learning that a once-scary situation is now safe (Neuropsychopharmacology, vol 33, p 901).
Assuming humans also have these changes in their amygdala, this could further explain some of the symptoms of autism. As a result of an overactive amygdala, says Kamila Markram, autistic people find the world “not only intense, but also aversive”. Ordinary situations can be terrifying and fear is easy to learn and hard to forget. This is another reason why autistic people prefer predictable, repetitive routines and can overreact, sometimes explosively, to change.
So far the intense world hypothesis is playing well with autism experts. “I really think it is spot on,” says Belmonte. “For some years the autism literature has needed a greater focus on the idea of autistic behaviour as a normal response to an abnormal perceptual and cognitive world.” Baron-Cohen too sees many positives. While he disagrees with some aspects of the idea, overall, he says: “The attraction of the research is to find basic differences between the autistic and typical brain, out of which higher cognitive differences such as in systemising may develop. In this view, the higher cognitive differences are secondary to these more basic sensory differences. This is a view I have a lot of sympathy with.”
It also rings true with autistic people. “When I was younger, the school bell was like a dentist’s drill hitting a nerve,” says Temple Grandin, an animal scientist at Colorado State University in Fort Collins well known for being autistic. “I think it’s difficult for people to imagine a reality where sounds hurt your ears and a fluorescent light is like a discotheque,” she says. The Markrams have also received a positive response from families affected by ASD. “It gives them comfort,” Kamila Markram says, “there are actually reasons why these children aren’t responding well.”
Some experts, however, are not convinced. The strongest critique comes from those who think the hypothesis extrapolates too much from the VPA rat. “[The Markrams are] extremely good on the neurophysiology… but we don’t yet know how to translate what the neurons are doing to what’s happening psychologically,” says neuropsychologist Chris Frith at University College London. “I think they made a leap too far.”
Keller, however, defends the use of animal models, noting that VPA causes the same anatomical and behavioural abnormalities in humans, monkeys and mice. “I see it not as a model, but as a recapitulation of the disease in other species,” he says.
These arguments aside, the intense world theory also has implications for the debate over the ultimate causes of autism. Although autism is highly heritable, genes alone are not enough to explain it; in pairs of identical twins where one twin has autism, the other is affected only 60 per cent of the time at most.
The VPA rat’s striking similarities to autism suggest that the condition might arise early in pregnancy when an as-yet unknown environmental insult combines with genetic vulnerability to damage the brainstem at a vital time. “What this study emphasises is not genetics but environment,” says Casanova. “It also emphasises the idea of a window of vulnerability. The timing of the insult is of great importance.”
This could also explain the wide range of the autistic spectrum, from severe impairment requiring 24-hour care to the near-normality of high-functioning Asperger’s. The later in the window exposure occurs, the less wide-ranging the attack on the fetal brainstem would be, reducing the subsequent damage as more regions would already have had time to develop unharmed.
So how can the intense world idea be tested further? One way is to look for a correlation between sensory problems and the severity of ASD. If people with the worst oversensitivity – as measured by reactions to light, sound and touch – have the most incapacitating autism, that would offer support. And if intervening early in sensory problems mitigated the symptoms of autism this would also be evidence in favour.
Keller is collaborating on just such a study with researchers at Johns Hopkins University in Baltimore, Maryland, who have pioneered early detection in children as young as 6 months. Together they are looking at autistic children at the earliest possible stage to see whether reducing their sensory overload can help. Strategies include noise-reducing headphones and other ways of producing calmer, less stimulating environments.
These same measures already work for children who have endured severe early trauma and neglect, such as being raised in an understaffed or abusive orphanage. These children often have overactive amygdalas, heightened fear memories, are withdrawn and exhibit repetitive behaviours indistinguishable from autism.
The results of early intervention to help autistic children will be watched with interest, not least because one of the most striking features of the intense world hypothesis is that it casts almost everybody on the autistic spectrum as highly gifted. “Basically, our theory really says that most autistic people or people with Asperger’s are savants,” says Kamila Markram. “But this is buried under social withdrawal and fear of new environments. Their resistance to interaction and fear may obscure the hypercapability that they have. It may well turn out that successful treatments could expose truly capable and highly gifted individuals.”
The autistic spectrum disorder (ASD) includes classical autism (now known as autistic disorder), Asperger’s syndrome (also known as high-functioning autism) and a constellation of similar but somewhat ill-defined conditions including Rett’s syndrome, disintegrative disorder and pervasive developmental disorder-not otherwise specified (PDD-NOS).
Five leading theories of autism
Weak central coherence
Sees autism as a failure to integrate sensory information in a holistic or “gestalt” manner.
Impairment of the brain’s frontal lobes causes loss of the top-down “executive” controls which build the big picture at the expense of minutiae.
An underactive amygdala – a brain structure central to the processing of emotional information, especially fear – leads to severe problems with empathy and theory of mind.
Extreme male brain
An excess of testosterone during early development magnifies typical male cognitive traits, such as systemising, at the expense of empathy, sociability and other more typically “female” thinking styles.
Finally! A theory of autism that feels right!
I know that what holds me back socially is not ‘mind-blindness’ or ‘lack of empathy’ but my fear/shyness/stress response to other people. I have evolved several coping mechanisms to deal with this – the most primitive one is laughter. Since being very young, I giggle my way through sentences, even when there’s nothing to laugh at. This helps to relieve the stress response I feel when I interact with people, although it can make people misinterpret me, think I’m flirting with them, or think I’m completely crazy. I described in a previous post how the fear response in the amygdala is goverened by glutamate receptors. Autistics are thought to have brains bristling with glutamate receptors. This is a really good reason autistics should avoid MSG!
The other theories of autism listed above just don’t take into account what it feels like to be autistic or aspie. They are usually patronising and quite insulting and talk about autism in terms of brain damage and what is missing. Though the Markrams still resort to unfortunate language like ‘devastating’ to describe autism (a popular cliché that gets bandied about far too much), they at least take into account the increased brain size and neural processing power that autistics have. Here’s a link to the full text of the intense world hypothesis.
I don’t think they need to fall back on brain stem damage in the majority of autism cases. It just depends whether you were born or made autistic. I think the statistic quoted in the article of 60% autism concordance for twins is misleading – we’re actually talking about either twin just scraping either side of the diagnostic criteria. I’ve seen statistics of eighty or ninety percent in identical twins for more specific features of autism – and some of that mismatch can be explained by simple chaos theory. Things change and go in different directions as they grow. Everyone knows no pair of twins looks exactly alike. The same goes for their personalities.
The extra processing power, brain capacity, savant skills, and intelligence of autistics is usually painted as a meaningless quirk, something that results from the wider ‘brain damage’ in certain autistics. In actual fact it’s central to autism. I think some kids are just so autistic they can’t learn to use the big brains they’ve been gifted with because they can’t break through the fear, learn language, or deal with the sensory amplification.
I’ve been frustrated that the ‘theory of the mind’ (that autistics are ‘mind-blind’ to others and unable to empathise) seems to describe a condition that sounds completely alien to me, yet when I read the blogs of other auties and aspies, I see myself quite clearly. Sometimes doctors describe autistics as though they are emotionless automatons. This is far from the truth, especially as many autistics have parents or close relatives who have bipolar disorder. You can’t get more emotional than bipolar disorder. I feel things very deeply. A lack of empathy isn’t central to autism, it’s just a feature of the social withdrawal.
At last this is an attempt to understand autism from the autistic’s perspective instead of the perspective of the neurotypical observer. One could in fact accuse those neurotypical observers as being mind-blind themselves, for failing to empathise with the autistic and placing too great an emphasis on what are actually the secondary effects of the brain differences (lack of sociability, lack of empathy, lack of conformism, need for routine), instead of the primary effects (fear, stress, sensory amplification, pain, increased processing power).
In spite of the difficult sensory and emotional issues, there are so many positives to autism. That increased processing power creates great programmers and engineers, and even artists and writers (I’m sure Dean Koontz and Poppy Z Brite are at least half-aspie). I don’t think the modern world would actually function without aspies in the workforce acting as lynchpins and keystones in those highly specialised jobs no one else can do. I would argue that the autistic personality and brain are required by the modern age, and that many inventions and technological advances would not have occurred without the effort of individuals who have autistic tendencies.
Sometimes the sensory disturbances themselves can lead to great talent. A lot of musicians and composers have autistic traits. When music takes over your brain, your brain can learn the patterns in the music. My sister and I both have a perfect ear. We can distinguish tiny differences in pitch between notes. My sister harnessed her heightened sensory perception of sound and became a musician who can pick up tunes and distinguish and name notes by ear.
Have you heard of this? It isn’t exactly in the DSM, but it’s an interesting concept.
Munchausen by Internet is a type of factitious disorder which utilizes the Internet’s easy access to a broad audience. […] The term was coined by Marc D Feldman, M.D., in 2000. It specifically relates to Munchausen Syndrome – where a sufferer fakes or induces illness to gain attention and sympathy – and Munchausen Syndrome by Proxy (MSbP), where the sufferer creates fake illnesses in others, or physically harms others. Sufferers of MSbP are often parents who inflict fake illnesses on their child, or children. Munchausen by Internet
Munchausen syndrome differs from hypochondria in that sufferers – or should I say ‘sufferers’ – actually know they aren’t ill and are faking for attention, where as hypochondriacs genuinely believe they are ill when they aren’t (or, in the case of man-flu, they believe they are dying when they get a cold).
Munchausen syndromes can be very serious. Beverley Allitt, the child-killing nurse dubbed ‘the angel of death’, who is imprisoned in a secure mental hospital not so many miles from where I live, is alleged to be a sufferer of Munchausen by Proxy. However Munchausen’s diagnoses are a point of controversy, poor Sally Clark, Trupti Patel, Angela Cannings, and many other mothers were wrongly accused and convicted of baby murder on the basis of a theoretical diagnosis of Munchausen by Proxy by the discredited paediatrician, Professor Sir Roy Meadow.
So let’s hear the stories behind Munchausen by Internet.
When Pam Cohen, a 41-year-old bereavement counselor, first heard about the Kaycee Nicole Swenson hoax, her first thought was Munchausen.
Kaycee was a 19-year-old Kansas woman who chronicled her painful battle against leukemia on a Web log. The site elicited a sympathetic following of well-wishers, who collectively grieved over Kaycee’s death on May 15.
When it was revealed that Kaycee was actually 40-year-old Debbie Swenson, a very-much-alive homemaker in Peabody, Kansas, The New York Times declared it an elaborate Web hoax.
But to Cohen, Swenson’s “hoax” sounded a lot like Munchausen by Internet, a recently identified mental disorder where sufferers go into chatrooms and other online communities, pretending to be gravely ill. Cohen, who became romantically involved with a Munchausen sufferer she first met in an online support group, describes the experience as “emotional rape.”
Munchausen Syndrome is the severest form of what is known in medical circles as factitious disorders, where a patient feigns, exaggerates or self-induces illness. Known among doctors as “black hole patients,” “ER jumpers” or “heart sinks,” people with Munchausen often go to desperate lengths to prove they are sick. They Think They Feel Your Pain
You know, about a year and a half ago there was an individual on the support forum who took up a lot of everyone’s time and attention and seemed intent on causing as much disruption as possible. She had alleged ‘reactions’ to totally non-reactive things – for example to phenolic plastic handles on cookware, i.e. to bakelite(!) At the time I simply thought she must be reacting to something in her diet and just humoured her. She was making so many mistakes I didn’t want to make her look even stupider.
Most tellingly, there was the fact that his life was so dramatic. That’s a key sign of what some have dubbed “Munchausen by Internet.” His mother died of cancer when he was a child. His father abused him. He was raped in his apartment, and then again, in the parking lot of the hospital where he supposedly worked. He threatened to kill himself if he didn’t pass his exams. His cousin was hit by a car – on his birthday. Despite the fact that a few days before Christmas the cousin was on death’s door, he recovered enough that he was home by Christmas. His friend donated bone marrow to two people (when I’ve been in the database for ten years, and haven’t been called once). He saved a Russian mail-order bride from a botched abortion. And much more. Taken all together, it just didn’t seem likely.
At this point, you’re probably thinking I’m a complete idiot for not catching on earlier. A Strange Case of Munchausen by Internet
The individual on our support forum took a couple of trips to the ER for absolutely frivolous reasons and made a huge deal out of this, as if her symptoms were life-threatening when they barely warranted a trip to a local doctor. Yet at other times she acted so blasé about it all. She had all kind of weird, warped theories about food chemical intolerance and it was very clear she didn’t even have a basic understanding of chemistry or biology, though she often tried to blind other forum members with long pseudo-technical ‘explanations’ to justify her strange theories. Her behaviour was so puzzling, contradictory, and erratic, that I questioned privately whether she was a hypochondriac. My other theory was that she was bipolar, to the point where she was experiencing thought disorder. She and a second individual, who at the time acted as her enabler, were the catalyst for my leaving the forum for several months. I was absolutely crushed by the experience.
In a study published in the Southern Medical Journal, Feldman describes four cases of Internet posers. In one, a “young woman” held a support group spellbound with the tale of her struggle with cystic fibrosis. Her dream was to die on the beach. That finally happened, according to a posting from the sick woman’s sister “Amy.” Group members picked up on the ruse when they noticed similarities in spelling errors in postings from Amy and from the sister who was supposed to be dead.
In another, group members were duped by a person claiming to be a 15-year-old-boy with migraine headaches, a blood disorder, and a seizure disorder — who also happened to be a fourth-year medical student. His deaf “mother” stepped in when members started asking questions, and warned them that the boy might slip into a severe depression if they kept it up.
“I became aware of these cases because people who felt victimized contacted me,” Feldman says. “I think their telling me was an effort to expunge their souls of this deception, but also to get professional advice to restore their groups.”
And there’s no doubt these storytellers can have an enormous impact on Internet support groups. Among other things, Feldman says, they can:
- Create a division between those who believe the tale and those who don’t
- Cause some to leave the group
- Temporarily distract the group from its mission by forcing it to focus on the poser
“Overwhelmingly, these support groups offer a tremendous benefit to people,” he says. “[But,] as in other areas of our lives, we have to be informed.”
But figuring out who is faking may not be easy. The unspoken tenet of Internet support groups is acceptance, and many of those suffering from disorders like Munchausen do their homework — which is easier than ever, thanks to the web.
“The Munchausen patient used to have to go to a biomedical library and lug around these heavy textbooks,” Feldman says. “Now they can lie back in their chair and click here and there … and become more of an expert at esoteric medical diagnoses than a doctor.” Sympathy-Seekers Invade Internet Support Groups
Let’s face it. You can’t get more esoteric than food chemical intolerance. It took me years to figure out what was wrong with me. Most of the people I’ve come across who have this problem have spookily similar symptoms to me and I can tell instinctively that they are genuine sufferers because of the way they talk about their experiences. Sometimes, however, you come across people who just don’t add up.
Clues to Detection of False Claims
Based on experience with two dozen cases of Munchausen by Internet, I have arrived at a list of clues to the detection of factitious Internet claims. The most important follow:
- the posts consistently duplicate material in other posts, in books, or on health-related websites;
- the characteristics of the supposed illness emerge as caricatures;
- near-fatal bouts of illness alternate with miraculous recoveries;
- claims are fantastic, contradicted by subsequent posts, or flatly disproved;
- there are continual dramatic events in the person’s life, especially when other group members have become the focus of attention;
- there is feigned blitheness about crises (e.g., going into septic shock) that will predictably attract immediate attention;
- others apparently posting on behalf of the individual (e.g., family members, friends) have identical patterns of writing. Munchausen by Internet: Faking Illness Online
I don’t know whether the individual in question had Munchausen by Internet, though reading through this list I can see she met most of the criteria. Due to her erratic emotional behaviour I am still leaning towards some kind of bipolar/manic scenario with a touch of hypochondria and paranoia thrown in. Whatever the truth, the individual had a major hissy fit when her theories were disproved, and she left the group. She later appeared on a more altie, less scientific forum where she was accepted with open arms by chronic lyme disease sufferers and GAPS dieters alike, having claimed to have ‘cured’ herself with vitamins. The story changed over time, and more recently she claimed to have ‘cured’ herself with aryuveda. Lately, she has ‘cured’ herself with (wait for it), the bacterial recolonisation of her gut.
Another New Scientist article of interest to failsafers.
The same vitamins and supplements that mothers-to-be take to protect their kids from birth defects could predispose children and even grandchildren to asthma.
If mice studies are confirmed by studies in humans, expectant mums may need to strike a balance between amounts of supplements such as folate, which reduces the risk of spina bifida, and those that bring on asthma, says John Hollingsworth, a doctor who specialises in diseases of the respiratory system – pulmonology – at Duke University Medical Center in Durham, North Carolina. “A little could be helpful and a lot could be harmful,” he says.
He and his colleagues fed pregnant mice supplements including folate, vitamin B12 and zinc in doses roughly equivalent to those recommended for pregnant women. These chemicals turn down the expression of certain genes and mark the DNA of a developing embryo so that the effect is passed from generation to generation, a process known as epigenetics.
Mice who ate the supplement-rich diet delivered pups with some signs of asthma. Their lungs contained high levels of immune cells and proteins that predict asthma in humans compared with mice that ate a supplement-poor diet.
To future generations
When Hollingsworth’s team bred these pups on a normal diet, their offspring still showed some signs of asthma – an indication of epigenetics in action.
Indeed in a genome-wide search for genes epigenetically marked for lowered expression in the first generation of mice pups, the researchers turned up several genes important for harnessing the immune system. Mice completely lacking one such gene, called Runx3, develop spontaneous asthma, and the researchers suspect epigenetically reduced expression of the gene could have the same effect.
“It’s a nice mouse model, but it’s a mouse model,” says Rachel Miller, an allergist and pulmonologist at New York Presbyterian Hospital. She says that to prove that maternal supplements could predispose kids to asthma, researchers would need to closely track the diets of expectant mothers, as well as any asthma that develops in their children.
“I think it needs to be tied back with human disease,” agrees Hollingsworth. But if confirmed by such human studies, the link between dietary supplements and asthma might explain the mysterious rise of the disease in developed countries, where pregnant women are advised to take folate supplements.
However foods such as leafy greens, broccoli and nuts, also contain folate and can silence genes. Cigarette smoke makes the same epigenetic changes, and one retrospective study found that grandmothers who smoked while pregnant are more likely to have asthmatic grandchildren than non-smoking grannies.
“You are what you eat – or you are what your grandma eats,” Hollingsworth says.
Journal reference: Journal of Clinical Investigation, DOI: 10.1172/JCI134378 (in press)
Yes, there is such thing as too much of a vitamin. In fact, too many can vitamins damage the correct function of your immune system.
Although only a mouse study, this is the first significant evidence I have come across suggesting epigenetic factors could be involved in a food chemical intolerance related symptom. This theory makes a lot more sense to me than the usual speculation banded about over vitamin deficiencies causing epigenetic alterations. Food chemical intolerance would be much less common today, if it were correlated with vitamin deficiency. According to the hype (though not necessarily the reality), asthma is more common today.
Other genes that can accidentally be switched off by methylation include a handful of important genes designed to help the immune system detect and destroy cancer cells.
The same genes that predispose to asthma also predispose to eczema. I know of a lot of mothers who have given birth to babies with eczematous rashes in the last few years, including a several dedicated WAPF members. They have followed WAPF advice to the letter, eating liver and other high folate and vitamin A sources during their pregnancy (vitamin A is also involved in gene methylation). Asthma takes a few years to develop, but usually appears between the ages of three and six. I feel sorry for those mothers, because they really thought they were doing right and now they have this possibility to look forward to.
Bipolar disorder, autism, ADHD and fibromyalgia are also more likely in individuals with asthma, possibly due to leukotriene overproduction or COX II inhibition – the science is at a very early stage here, but this is the main system salicylates act on.
I have been in a dilemma over what I should do if I should get pregnant. To supplement or not supplement? Folate makes me quite ill, and it makes my asthma and eczema worse. Perhaps I should be listening to my body instead of to yet more flaky medical/nutritional advice. Rhetorical question: how come medical authorities never test anything properly before they advise the population to do it, á la low fat diets, fibre, statins, thalidomide, resting babies on their faces, five-a-day…? Since when was mass experimentation on the populace an okay thing to do?