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The sensory and emotional issues around asperger's

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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.

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Written by alienrobotgirl

27 September, 2008 at 10:00 am

Posted in Asperger's Syndrome

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In the darkness

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I watched a channel 4 documentary on the Elizabeth Fritzl case a couple of days ago. In case you have been living in a hole yourself, this is the case of the poor woman who was imprisoned and abused by her father for more than twenty years in a dark, airless cellar in Austria.

The only picture I could find of Elisabeth (which I have now lost again) is that of a woman with a blanket thrown over her head, being accompanied by police officers. Her legs are bare and have the lilac quality of skin that has absolutely no pigmentation.

Elisabeth’s freedom only came about when Kerstin Fritzl, Elisabeth’s oldest child, was bought to hospital unconscious by Josef Fritzl, with a note from her mother. She later suffered seizures and was found to be suffering from multiple organ failure.

Doctors had no idea what was wrong with her and a media appeal was launched asking her mother to come forward as she may be able to provide answers as to the cause of Kerstin’s illness. Police suspected severe neglect and abuse.

Days later Elisabeth appeared with her father at the hospital where Kerstin was being treated. At first Elisabeth evaded police questions, but then promised to tell the truth if the police promised she would never have to see her father again.

With the revelation that Kerstin had spent 18 years locked in an underground cellar with her mother and two siblings, it must have become obvious to the doctors that she was suffering from dramatic vitamin D deficiency. This information is largely absent from internet news accounts of the case, but it was revealed by the channel 4 documentary to be the cause of Kerstin’s illness. Kerstin currently remains in an induced coma – presumably to manage status epilepticus or unbearable pain – though reports are promising that her health is recovering. Apparently her kidneys have started working again.

What is amazing to me is that her mother, Elisabeth (42), and siblings, Stefan (19), and Felix (5), did not end up in the same state. Elisabeth has survived for twenty four years without any sunlight whatsoever. There have been a number of reports in the British press that suggest the Fritzl family’s teeth are badly decayed and that they “speak in animal noises” and walk strangely (ricketts?), but this has been denied by police officers and doctors close to the case, though all are said to be deficient in vitamin D, anaemic, and have poor posture and poor immune systems. Why did Kerstin get so sick above and beyond her peers? Perhaps her genetics make her more vulnerable to vitamin D deficiency. Perhaps she did not eat something protective that her family members ate – like dairy products, mushrooms, or blood sausage (blood is a very rich source of vitamin D). Perhaps she contracted an infection, perhaps a kidney infection (vitamin D is largely regulated and recycled by the kidneys), that led to her crisis.

Natascha Kampusch, fellow Austrian, who was imprisoned at the age of ten for over eight years in a cellar under similar circumstances appears not to have suffered from any bone structure abnormalities. In fact she has a remarkably attractive face with a well-formed, broad jaw line. As does her captor, Wolfgang Priklopil.

Far from speaking in animal noises, the Fritzl children are said to be eloquent, polite, well-behaved and very intelligent, a testament to their mother’s care. Stefan is said to be a delight to talk to. The plot thickens somewhat when we learn that Josef Fritzl was abusiness man who dealt in property, and an engineer who built a warren of underground rooms under his house. He put his meticulous planning skills to a repugnant use in the imprisonment of his daughter, carefully crafting her living space prior to her kidnap, and even luring her into the cellar under the pretext of helping him carry a heavy reinforced steel door that was to seal her dungeon.

Indeed, Austrian police suggest that Josef Fritzl was so well organised he was able to take long holidays abroad without fear of his prisoners starving to death, and he even claims that if he was gone for too long, the electronic locking mechanism on the cellar door would automatically unlock. Fritzl’s business associates describe him as a man who was unusually reliable – if he said he would return a tool he would borrowed in two days time, he would return it in two days time. Fritzl’s neighbours describe the family as “keeping themselves to themselves”, growing a huge hedge around their garden, and never visiting local garden parties. And what of Priklopil? He too fits the same personality type. When he died he was working as a communications technician for Siemens.

From the asperger’s syndrome blogs I read there has been silence on this issue, just as there was silence over the Virginia Tech University massacre when the decidedly strange Seung-Hui Cho went on a shooting rampage. Seung-Hui Cho suffered from selective mutism, social anxiety and depression. His family thought he might be mentally ill. According to his grandfather, Cho never made eye contact with him, called him grandfather, or tried to hug him. He was teased for his shyness and strange speech patterns. He appears to have looked down on and hated his peers – as happens commonly when an intelligent individual is bullied and hounded for being different.

I don’t believe that other aspie bloggers haven’t noticed these personality traits. The people whose blogs I read have finely tuned aspie radars and spot patterns quickly. I believe that, like me, they simply don’t know what to say.

Written by alienrobotgirl

25 May, 2008 at 10:36 am

Posted in Asperger's Syndrome

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The extermination of the savant

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NEW YORK (CNN) — He’s only 5½ years old, and yet he’s practically memorized the entire New York subway grid.He reads at the fourth-grade level, plays two-handed piano compositions and is better versed than most adults about the Fibonacci code, a complex mathematics sequence.

Dylan loves Italian music and draws pictures that artist Jackson Pollock would be proud of.

He also happens to be autistic.

Gwenyth Jackaway, Dylan’s mother, is a professor at New York’s Fordham University. She’s single but had always wanted to have a child. So she contacted California Cryobank, one of the largest sperm donor banks in the country.

Cryobank doesn’t reveal the identities of donors but allows people to choose based on the traits they’d like their child to have. Jackaway decided on “Donor X” because he appeared philosophical and intelligent on paper. He liked music, loved to travel and had a high IQ and a degree in economics.

What she couldn’t know then is that her son would have autism. So she started to wonder whether Donor X might carry a gene that could have contributed.

The cause or causes of autism are not known and are hotly debated. Most experts believe that genetics are a component, making a child predisposed to autism or responsive to an environmental trigger.

“It’s a combination of being genetically vulnerable and then having some kind of social or toxicant exposure that tips you over,” according to Dr. Gary Goldstein of the Kennedy Krieger Institute.

Researchers have found some genetic areas associated with autism, but it could take years before the gene or genes that cause autism or contribute to it will be determined.

Until then, Geri Dawson, chief science officer for the Manhattan-based advocacy group Autism Speaks, says there’s no way to screen for those genes and prevent them from being passed to a child.

“We wouldn’t be able to screen a donor for autism because we don’t yet know the specific genes that are contributing to autism,” Dawson said. “But there is a lot of research going on, and I would say in the next five to 10 years, we will have identified between five and 10 genes that we know raise the risk for autism.”

Once the autism gene or genes have been identified, it would theoretically be possible to screen for those genes, according to Dawson.

Jackaway says she went into a period of mourning when Dylan’s autism was diagnosed at age 2.

“When you’re handed a diagnosis of some sort of developmental disorder, you have to let go of the child you thought you were going to have,” Jackaway said. “There’s a sense of loss of the child, a grieving process. There’s denial, there’s rage, and then there’s the tremendous sadness, and hopefully you get to a place of accepting.”

Jackaway says she had to accept that “I don’t have that child I thought I was going to have. But I have this child instead, who’s right here in front of me.”

Through a Web site called Donor Sibling Registry, she reached out to other women who used Donor X. She found six families who had used the same donor.

Two years ago, she visited Theresa Pergola in the New York area; she had given birth to triplets using sperm from Donor X. Just minutes into their meeting, Jackaway noticed Pergola’s son, Joseph, 2, exhibiting some of the same behavior as her son.

“He was walking on his toes; he was flapping his hands. There seemed to be eye contact issues,” recalled Jackaway, who immediately suggested screening Joseph for autism.

“She told me that she saw characteristics of autism, and it was very upsetting to me at that time,” Pergola said. “I didn’t know what to expect from that point on. I know I was scared, and she was there to let me know that it was going to be OK.”

Pergola says she was afraid because she had an image of autism in her head and believed her son would be “in the corner and rocking and not talking.”

She says Jackaway reassured her that wouldn’t be the case.

One month later, a test confirmed what Pergola already knew: Joseph was autistic. The diagnosis brought her to tears, and now these two women whose sons share a father were immediately connected by another bond: autism.

“She was terribly upset,” Jackaway remembered. “That moment is a terribly frightening moment. You get handed a diagnosis, and you get handed an entirely new future.”

In six families Jackaway contacted that had used Donor X, three of the children are autistic, and one is showing signs of autism.

But would Jackaway be happier today if there had been a way to screen Donor X for an autism gene?

“I’ve done a lot of thinking about this, and to say yes to that is to say that I wish Dylan isn’t Dylan,” Jackaway said. “I love my son and everything about him, and that means loving his autism also. Loving your children means loving everything about them. Our children don’t have autism; they are autistic. It’s part of who they are.”

There is currently no way to screen for autism, and in a statement, the company said in part:

“There is no current genetic test to detect autism. California Cryobank (CCB) employs one of the most thorough and rigorous donor screening processes in the industry, with less than 1% of all applicants actually becoming donors. The standard CCB procedure for screening donors involves extensive physical, genetic and health screening …”

Since the discovery of autism in some of the families that used Donor X, Cryobank had this to say about his samples:

“… per CCB policy, the donor’s samples were removed from the general catalog. These vials may only be sold to a client who has previously used specimens of this donor and is interested in ordering additional specimens. In this case the client is made aware of the new medical information and potential issues …”

The families don’t blame the sperm bank. In fact, Theresa Pergola says she’s still uncertain about an autism screening process, if and when it ever becomes available.

“It can go either way, on the one hand it could be helpful so that people could make choices about what risks they want to take,” says Pergola. “On the other hand it’s like, what else are they going to screen for, you know? Are they going to screen for certain personality traits? It’s hard to say. It’s really hard to say.” Autistic children linked to same sperm donor

Would it be silly of me to point out that I am not at all surprised that the offspring of a female professor and an economics graduate who likes music and has a high IQ ends up with an autism diagnosis?

Boy, you NTs really want to live in a Brave New World. Says Bev of Asperger Square 8:

It’s the fact that a mother can express such positive regard, and that a child can so clearly have much to offer, far from being a burden on society, and still…this is how the story ends:

“Per CCB policy, the donor’s samples were removed from the general catalog.”

Not just identified or labeled. Removed. As if another child like this one would be unacceptable. For anyone who doubts the implications of potential prenatal screenings, here is a wakeup call. Autism, even “shiny autism,” even when attached to obvious brilliance and supported by a loving and accepting family, is still judged to have no place in the “general catalog” of humanity. The Point of Awareness

No more Vincent Van Gogh, Leonardo Da Vinci, Andy Warhol, Jane Austen, Emily Dickinson, HP Lovecraft, Hans Christian Andersen, Lewis Carroll, George Bernard Shaw, George Orwell, Isaac Asimov, Ludwig van Beethoven, Wolfgang Amadeus Mozart, Bob Dylan, Michael Jackson, Woody Allen, Michael Palin, Alexander Graham Bell, Thomas Edison, Henry Ford, Howard Hughes, Bill Gates, Immanuel Kant, Charles Darwin, Albert Einstein, Isaac Newton… These are just some of the individuals who have been attributed today as having asperger’s syndrome or autism.

What would a world be like without autism? No more inventors, innovators, computer programmers, mathematicians, engineers, doctors, surgeons, artists, designers, composers, authors, actors, geniuses, entrepreneurs. It takes vital little traits from each of these personalities to coincide and produce autism. To exterminate autism, you need to exterminate all the genes that cause autism. Most intelligence genes would be erradicated in one fell swoop. Women who terminate their pregancies because their foetuses have a high chance of developing autism are going to have a big shock when they find that autism or ASDs repeatedly show up in the foetus whenever they become pregnant. That’s going to be a bit of a downer.

What would you have left if you took away all the autistic genes? Builders. Telephone sales people. Jocks. Cheerleaders. Administrators. Soccer moms. Hairdressers. HR managers. Radio Discjockeys. People who get liquored up and go to clubs. Oh my god, the Golgafrinchans! Nooo!

Good luck with the future of the human race. Be sure to preserve a few of our genes so you have something to fall back on when you remember you need some rocket scientists for that moon landing.

Written by alienrobotgirl

11 April, 2008 at 2:29 pm

Posted in Asperger's Syndrome

Tagged with

Aspie girls

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We know that children with Asperger’s Syndrome elicit from others, either strong maternal or ‘predatory’ behaviour. If the person’s natural peer group is girls, they are more likely to be supported and included by a greater majority of their peers. Thus girls with Asperger’s Syndrome are often ‘mothered’ by other girls. They may prompt the child when they are unsure what to do or say in social situations and comfort them when they are distressed. In contrast, boys are notorious for their intolerance of children who are different and are more prone to be ‘predatory’.

I was never really mothered by my peers, but I was accepted by the other girls at junior school and never really got into fights with them. I just tagged along quietly. The boys were predatory towards me. They did bully me. At secondary school things changed – girls start getting bitchy as they become teenagers, and that’s how I ended up a loner.

The fun came from setting up and arranging things. Maybe this desire to organise things rather than play with things, is the reason I never had a great interest in my peers. They always wanted to use the things I had so carefully arranged. They would want to rearrange and redo. They did not let me control the environment.

When involved with solitary play with dolls, the girl with Asperger’s Syndrome has total control and can script and direct the play without interference and having to accept outcomes suggested by others. The script and actions can be an almost perfect reproduction of a real event or scene from a book or film. While the special interest in collecting and playing with dolls can be assumed to be an age appropriate activity and not indicative of psychopathology, the dominance and intensity of the interest is unusual. Playing with and talking to imaginary friends and dolls can also continue into the teenage years when the person would have been expected to mature beyond such play. This quality can be misinterpreted as evidence of hallucinations and delusions and a diagnostic assessment for schizophrenia rather than Asperger’s Syndrome.

I didn’t play with dolls, I played with My Little Ponies. My sister and I had huge collections. We did do a lot of organising when we played. Our favourite games included ‘finding the right mummy for our new baby pony’ and ‘reorganising ponyland’. It wasn’t really about control, it was about categorising and systemising.

[T]he author has noted that some ladies with Asperger’s Syndrome can be unusual in their tone of voice. Their tone resembles a much younger person, having an almost child like quality. Many are concerned about the physiological changes during puberty and prefer to maintain the characteristics of childhood.

I used to speak in a childish voice all the time to my long-suffering partner. With me at least, it has nothing to do with puberty – though I didn’t particularly want to go through puberty. It’s a way of bypassing shyness or showing deference. I only know of two other girls who do this. One is my sister. The other is a female programmer I used to work with who I’m pretty sure was somewhere on the spectrum. She rarely talked in anything BUT a childish voice.

As with boys with Asperger’s Syndrome, they may see no value in being fashionable, preferring practical clothing and not using cosmetics or deodorants. This latter characteristic can be quite conspicuous.

That was me. I had no fashion sense whatsoever and I always wore awful clothes. I thought fashion, celebrities, pop music, gossip, makeup, were all shallow. Since then I’ve learned what a good way fashion is of ‘passing’ as normal and fitting in. I’ve even come to enjoy reading gossip magazines as a way to relax, and the aesthetics of nice clothes.

Some individuals with Asperger’s Syndrome can be quite ingenious in using imitation and modelling to camouflage their difficulties in social situations. One strategy that has been used by many girls and some boys is to observe people who are socially skilled and to copy their mannerisms, voice and persona. This is a form of social echolalia or mirroring where the person acquires a superficial social competence by acting the part of another person. This is illustrated in Liane Holliday-Willeys intriguing new autobiography, titled, “Pretending to be Normal”.

I was oblivious to the possibilities until I was in my late teens. Then I went through a phase where I came out of my shell at University. This involved me developing a close relationship with a girl on a fashion course. I emulated her style and she dropped hints that I was copying her, but she didn’t seem to mind. Under her influence I started using makeup and dyed my hair red (and pink for a while!). She did bitch and laugh about me behind my back though.

I still don’t wear makeup today – even before I developed eczema, I still hated the disgusting ‘dirty’ sensation of it on my skin.

The most popular special interests of boys with Asperger’s Syndrome are types of transport, specialist areas of science and electronics, particularly computers. It has now become a more common reaction of clinicians to consider whether a boy with an encyclopaedic knowledge in these areas has Asperger’s Syndrome. Girls with Asperger’s Syndrome can be interested in the same topics but clinical experience suggests their special interest can be animals and classic literature. These interests are not typically associated with boys with Asperger’s Syndrome.

Loves animals – check. Loves literature – check. I prefer science fiction and fantasy though!

The interest in animals can be focussed on horses or native animals and this characteristic dismissed as simply typical of young girls. However, the intensity and qualitative aspects of the interest are unusual.

My sister is obsessed with horses. I’m more of a dog person. But put me in front of any animal and I’ll usually squawk and squeal in delight. I feel a great deal of empathy for animals. A lot more than for humans – I always found most humans rather horrible, alien, and hurtful, so I’ve never had a huge amount of empathy for them.

Teenage girls with Asperger’s Syndrome can also develop a fascination with classic literature such as the plays of Shakespeare and poetry. Both have an intrinsic rhythm that they find entrancing and some develop their writing skills and fascination with words to become a successful author, poet or academic in English literature. Some adults with Asperger’s Syndrome are now examining the works of famous authors for indications of the unusual perception and reasoning associated with Asperger’s Syndrome. One example is the short story, “Cold” in “Elementals: Stories of Fire and Ice” by A.S. Byatt.

I’m ashamed to say I really was fascinated with Shakespearean sonnets when I was a teenager. I used to memorise literary quotes to pass time on the bus. And I am most definitely a writer. The fact that writing talent is noted in Asperger’s girls is a big confirmation for me.

The Pattern of Abilities and Development of Girls with Asperger’s Syndrome

Written by alienrobotgirl

8 February, 2008 at 7:47 pm

Posted in Asperger's Syndrome

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What the psychiatrists said

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The moral panic surrounding autism leads people to look for scapegoats in all sorts of areas. Long before the media whipped up a furore about vaccinations and mercury, autism used to be seen as a purely psychiatric phenomenon and was blamed on ‘refrigerator mothers’. Yet right from the beginning, this theory was questioned by psychiatrists… who felt they ought to blame the father.

The psychiatric literature is rife with studies of childhood disabilities in which detailed and particular attention is given to personality traits in the mother presumed relevant to the disorder in her child. […]

This study of the fathers of autistic children was undertaken in an effort to contribute to a broader view of the family dynamics related to the personality development of the child. Special emphasis has been placed on those personality characteristics which involve the ability to form meaningful relationships with other people and which influence marital and parent-child configurations. […]

The results to be reported are based on a careful review of the material recorded in the case histories about family structure. Since, from the first, certain unusual aspects of the family unit had been noted.

This 1956 psychiatric study of autism examined 100 families of autistic children, looking for signs of unusual personality typing in the father.

After recounting a number of cases describing adult fathers who obviously had undiagnosed, unpathologised asperger’s syndrome, the authors go on to write this:

The characteristics exemplified in these illustrative vignettes recur with monotonous regularity in 85 of the fathers in this series of 100. They tend to be obsessive, detached and humorless individuals. An unusually large number have college degrees, as do their wives. Though intellectually facile, they are not original thinkers. Perfectionistic to an extreme, they are pre-occupied with detailed minutiae to the exclusion of concern for over-all meanings. Thus, though a number are scientists, none is a major contributor to his field. They have a capacity for concentration on their own pursuits amidst veritable chaos about them. One father, in describing this feature in himself, cited as an example the prototypical behavior of his own father who, in the midst of a train wreck, was discovered by a rescue squad working away at a manuscript while seated in a railroad car tilted 20 degrees from the vertical!

Rather unpleasant put-downs and mischaracterisations aside, what we can conclude from this is that 85% of the autistic children studied had fathers with asperger’s syndrome. Being typical psychiatrists, the authors imply that it is ‘refrigerator fathers’ who are responsible for autistic children.

For purposes of comparison, a brief survey was made of the fathers of a control group of 50 private patients. These men had achieved levels of educational and professional attainment that were measurably lower. Far more striking, however, was the absence of the coldly mechanical attitude toward child rearing and the formalistic approach to marriage so widespread in the autistic group. This is to be contrasted with the total absence of overt psychosis among fathers of autistic children; indeed, only one was alcoholic and one other had exhibited an acute anxiety neurosis. This differs sharply from the experience of Bender with the fathers of schizophrenic children.

Predictably, the neurotypical children have neurotypical fathers. And the schizophrenic children have fathers who are more prone to psychosis.

At the same time, it should be noted that in 15 of the 100 fathers in this series, the usual pattern was not at all in evidence. They were described as warm, giving and devoted. While it is true that in 11 of these instances there was obvious maternal psychopathology, there remain 4 families in which neither parent exhibited such qualities.

So fifteen fathers were normal. But in eleven of those cases, there was “obvious maternal psychopathology”. I presume this means the mothers had asperger’s syndrome instead! Only in four families did the parents both appear neurotypical. Since asperger’s syndrome and autism appear to be caused by a combination of genes and increased homozygosity of those genes, it is not hard to see how those four ostensibly neurotypical parents could have, by chance, had autistic children.

The paper ends with an amusing cautionary note:

Equally disturbing for any theory of a simple one-to-one correlation between parental attitudes and children’s behavior is the observation that of 131 known siblings of our 100 children only 8 gave evidence of an emotional disorder, 3 of whom were autistic. That is to say, the fathers of autistic progeny were capable of rearing an equal number of normal offspring. Caution is indicated before implicating the characteristics of these parents too exclusively in the genesis of the disorder in their children, although it is difficult to believe that such gross distortions in paternal behavior were without effect on the development of these children.

Well, this looks like a roughly 50/50 chance of siblings having autism to me. It totally blasts the theory of refrigerator-anything as the cause of autism. It is, however, consistent with a genetic theory of autism.

Written by alienrobotgirl

8 February, 2008 at 5:22 pm

Posted in Asperger's Syndrome

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Tim Burton

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Helena Bonham Carter, to play Jacqui Jackson in TV drama, claims Tim Burton has autistic tendencies.

[…]

Bonham Carter feels her partner, the film director Tim Burton, may have autistic tendancies.

“I bet lots of animators are Asperger’s,” she told the Evening Standard. “Tim will kill me, but while making this drama, I realised he has a bit of Asperger’s in him. You start recognising the signs. We were watching a documentary about autism and he said that was how he felt as a child.

“But that quality also makes him a fantastic father; he has an amazing sense of humour and imagination. He sees things other people don’t see. Billy is enchanted by him.

“Jacqui’s Luke said that, without any Asperger’s, the world wouldn’t go around: they have application and dedication.” AutismConnect

Helena Bonham Carter and Tim Burton’s home life is unconventional to say the least – they live in Hampstead in two adjoining townhouses with a shared hallway, each house decorated and styled to suit their own personalities, because they felt they couldn’t live ‘together’ but didn’t want to live apart. Their son Billy sleeps in Tim’s side but spends most of his days in Helen’s side, which has a cosy kitchen.

Edward Scissorhands is also something of a cult film. His unique and recognizable visual art and tendency to sympathize with the outsider has led some to see Burton as an auteur. The singularity of his movies may have less to do with Burton as auteur, and more to do with the people commonly involved in his films; musician Danny Elfman, costume designer Colleen Atwood, and actress Winona Ryder are a few examples of some Burton collaborators involved with Burton projects aside from Edward Scissorhands. Nevertheless, this film seems to aptly support the notion of Burton as an auteur, as the allegorical structure of the film is supported by its cinematography, and its message is in keeping with the common theme of disability and the well-meaning outsider often explored by Burton in both films and books; here, it seems as though Burton has, either accidentally or intentionally, constructed a near-perfect allegory of a man afflicted with the autistic spectrum disorder known as Asperger’s Syndrome.

[…]

The most puzzling question this allegorical reading raises is this: why would Tim Burton, who seems to have had no knowledge of autism or Asperger’s syndrome have written such a precise allegory for the disorder? I would guess that the only way Tim Burton could have written this story, with all its implications, both subtle and overt, is if he himself is an individual with a disorder on the autistic spectrum, or was very close to a person similarly afflicted. Burton himself is described as an “introverted, unassuming person” (Jackson, McDermott). In his own biography, Burton on Burton, he says, about his childhood, that he was often alone, and had trouble retaining friendships. “I get the feeling people just got this urge to want to leave me alone for some reason, I don’t know exactly why. It was as if I was exuding some kind of aura that said ‘Leave Me The Fuck Alone (sic)'” Tim Burton’s Edward Scissorhands as a Psychological Allegory

Can you think of a film of Tim Burton’s that doesn’t explore the theme of the outsider? Edward Scissorhands is one of my favourite films. I remember seeing that alien pastel coloured neighbourhood through Edward’s eyes and feeling a strong empathy for him.

Being of that era, Heathers and Pump Up the Volume spring to mind as other classic ‘outsider’ allegories I remember from my school days.

I was entranced by Burton’s version of Charlie and the Chocolate Factory. The main character was again played by Johnny Depp, who is suspiciously good at playing eccentric characters. During that film I kept thinking of Michael Jackson.

I’ve always had the perpetual feeling that I’m one of the few sane people on the planet and the rest of the world has gone mad. There are some authors that I read that I get this same sense from – that they’re constantly exploring life as an outsider in a weird world without even being consciously aware of it. Roald Dahl, Douglas Adams and Terry Pratchett to name a few. They’re writing the stories of their lives.

Written by alienrobotgirl

5 October, 2007 at 7:00 pm

The other aspies

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It’s hard to find statistics on how many people have asperger’s diagnoses. According to the BBC (and please feel free to ignore the horrible and depressing descriptions of autism and asperger’s that they use), the number of people ranges between 0.01% (one in a thousand) to 3.6% (one in twenty eight). A lot of sites quote the 1:10 female to male statistic, other sites quote 1:6.

Most of the aspies I’ve met online are female aspies who have self-diagnosed in adulthood. The male aspies I’ve met seem to be more extreme, probably because the male brain is less suited to social skills in the first place. I personally think that most of the genes may occur in a 1:1 ratio, but that being female acts to mask some of the more extreme differences of asperger’s. The only gene I know of that is sex linked is monoamine oxidase. Males only have one copy, so if they get an inefficient version they become more vulnerable to amines. A female has two copies of the gene, so statistically they have more protection against amines.

In my family, there is a definite trend for eccentric women as well as eccentric men – both grandmothers in particular! I had a particularly crotchety and unsociable great aunt, Aunt Kath, on my father’s side who my mother really disliked (my mother dislikes most of the aspies in the family). Aunt Kath, I’m told, liked me but disliked all the other grandchildren. Perhaps I was less alien to her.

I’ve been thinking about when I was at secondary school. The school had well over a thousand pupils – perhaps 180-200 in each year. In my year there were four girls I considered ‘like me’. They were like me for slightly different reasons than each other. One was very quiet and studious and tagged along with the privileged girls. She went on to get a masters degree – I think the only person from my year to do so that I know of apart from me. The other two were my friends. I didn’t meet them until I was about fifteen – I was a loner for most of my time at secondary school. There was a neurotypical girl (we’ll call her R.) who seemed to collect eccentrics and went to unusual measures to be my friend. Her two other friends were M. and A.

M. was so quiet that she never spoke of her own accord, and when you addressed her directly her response would be monosyllabic. I don’t recall her having a problem with eye contact. I don’t recall her appearing shy or embarrassed, but she always seemed to have a funny Mona Lisa smile on her face that made me think she was probably enjoying a secret joke at everyone else’s expense. In hindsight, I think she was probably just very embarrassed, but also quite amused by our other friend, A. who was very noisy.

A. reminded me of my sister a bit because she was noisy. She was very opinionated and talkative, and definitely had a case of ‘little professor syndrome’. She would lecture you on any subject under the sun given half a chance. I used to describe her personality as a mixture of C-3PO and Mary Poppins. She held some very eccentric ideas about the world and I once had an argument with her because she thought that radio waves could be blown around by the wind. Whilst I was maths blind, she was extremely good at maths and physics, and went on to study as an engineer at university. She had two other sisters, one who was totally NT and the other was older and a bit wild. A. also had middle-child syndrome. She was my best friend for several years until we went our separate ways to university. She often took things very literally, and she seemed blind to the fact that R. was always mocking her. No one ever ‘got’ her jokes, and she complained that people were always misinterpreting her.

So that’s four girls in my year of 200 pupils who had the potential to score very highly – or one in fifty. I have no idea how many boys would score highly. I don’t remember much about the boys at secondary school. I don’t remember their names, and I didn’t interact with them. Seriously.

The first boys I met who were in any way ‘like me’ were on my masters degree. I think most of the people on my masters degree were quite eccentric and had social interaction issues in one way or another. I expect people on a masters course make up a very small, select segment of society. I guess most of the neurotypicals had been weeded out by that stage! Several of them seemed to be incapable of talking about anything but sex. Others didn’t talk much at all, or were very, very sensitive. One was a (really lovely) schizophrenic – who would not have had her creative talent if not for her schizophrenia. I’m big on neurodiversity.

I happen to think there’s an undiagnosed syndrome in existence – let’s call it auteur syndrome for want of a better name. It’s not neurotypical, and it comes with creative talent, whether it be writing, acting, painting, music, or something else. It might manifest as a kind of creative asperger’s syndrome, or it might manifest like my maternal cousins and my sister – as popularity and sociability combined with creative flare. It seems to go hand in hand with obsessions, bipolar disorder and ADHD. People like this get very frustrated in ordinary office jobs and have to do something a bit unusual with their lives – like being chefs, actresses, comedians or rock stars. I think it must be a dopamine thing. Aspies often have people like this in their family – brothers or sisters or cousins.

When I first started meeting computer programmers through temping work after university I was surprised to discover how much I had in common with them in terms of personality. I should have guessed then I suppose! My other half, a programmer, was the first person I met who I felt was really like me. He scores high-normal, and there are only five IQ points between us. I use him as a social crutch. He’s also the smarter one. Just.

Written by alienrobotgirl

29 September, 2007 at 5:16 pm

Posted in Asperger's Syndrome

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