• We have updated the guidelines regarding posting political content: please see the stickied thread on Website Issues.

Autism Spectrum Disorders (ASD): Compendium Thread

marion

Ungnoing.
Joined
Nov 3, 2001
Messages
1,571
DerekH said:
Some studies appear to show a rise in autism since the introduction of MMR. Other studies disagree.

I think a lot more people are diagnosed as having Asperger's these days simply because even the mildest cases are recognised now ( I read quite a few sites on it recently in the search for what might be wrong with my 16 year old son ). It might be possible that people who are diagnosed with Asperger's get classed as being autistic where they didn't used to or by people who want the figures to fit what they believe ?
Marion
 
Re: Aspergers

TVgeek said:
Wired Magazine did a write up a few months ago on
the explosion of autism and Aspergers in Silicon Valley.

http://www.wired.com/wired/archive/9.12/aspergers.html?pg=1&topic=&topic_set=

Does this make sense?
Does to me.

After coming across some stuff on Asperger's a few months ago, I asked my Doctor if this could possibly be a description of my problems. He consulted various other specialists I've seen, and the eventual conclusion was No (although it made 'em think!), but he conceded that we all exist on a wide spectrum of human behaviour and very few cases of any syndrome are clear-cut.

Not that it would have made any difference at my age anyway.

Also the attraction to maths/physics rang a bell -

- what do you mean, you noticed!
 
Okay, a tad off topic r/t MMR vaccines, but relevant to the major increase in autism diagnosis.

Here in the US, most developmental disabilities in children are now being labeled as autism - even when the child presents with symptoms that are incredibly different, ie mental retardation, due to the myriad of services, programs and fundings available for children with autism that don't exsist for other disabilities. I was told by our head clinician that neuroligists do this as a "favor" for the parents and child (our clinician offered that about the only DD not being labled as "on the autism spectrum" is Down's syndrome, due to the obvious physical characteristics).

This does a great disservice to those children with genuine autistic tendancies; services are geared towards the lowest common denominator, as programs designed to serve mentally retarded children could seriously damper any future for an autistic child. AUTISM IS NOT MENTAL RETARDATION, usually these kids are ultra-bright, just need to be taught in a different way. Phew. Sorry about that rant. You can have your thread back now, I'll get off my soapbox. :)
 
And this article clearly shows that the medical establishement is struggling to deal with this issue (leading to fatal results):

Hunting for a miracle

A child has died after having controversial treatment for autism. Sara Pennington on her own search for a cure

Wednesday August 31, 2005
The Guardian

I have a confession. Some years ago I bought a tube of little pills from a homeopath that she'd manufactured from my son's own faeces. I can't believe I was persuaded to hand over good money for this product. More to the point, I wonder what must have been going through my mind that I even entertained the idea of feeding my sick child his own excrement, albeit in a very diluted form - even though, in the end, I never did suppress my rational scepticism enough to give it to him.

So what drove me to poo pills? It's because my eight-year-old son Thomas has autism. As with many other children who have this perplexing disorder, mainstream medicine had next to nothing to offer him.

When Thomas was in physical distress and crying out at night in pain my GP - in answer to my demands to find out what was really wrong - could only come up with the most basic urine test using a dipstick. To be seen at a specialist hospital clinic for Thomas's gut problems was a two-year wait. So maybe I got desperate and lost sight of my better judgment. I started to search for alternatives. I admit I may have been vulnerable at times to people peddling a bit of hope.

Last week a five-year-old child with autism, Abubakar Tariq Nadama, died after travelling from Britain to the US to undergo controversial treatments at a Pennsylvania clinic, meant to remove certain metals from his system, such as mercury and lead.

We have no idea if the child's death was directly caused by this procedure, chelation, which was reported to have involved injections of ethylene diamine tetra-acetic acid, a substance said to help flush out heavy metals.

But we do know that there is a growing phenomenon among parents of rejecting the conventional belief that autism is necessarily a genetic disorder for which there is no known cure. Generation Rescue, a parent-led group in the US, goes so far as to claim autism is mercury poisoning that has been wrongly diagnosed. They link its origins to mercury-containing preservatives once commonly used in childhood vaccines. By removing mercury from the body, a cure for autism is possible, the group believes.

Testimonials from parents describe how their children started behaving "normally" after chelation - a process that can take up to two years. But critics say that the link to mercury toxicity is unproven, chelation is too risky and that autism cannot be cured. The worth of chelation as a treatment for children with autism has yet to be subjected to the most fundamental standard of proof: stringent scientific testing through the medium of reputable clinical trials.

In my son's case, I feel hopes of a cure for his autism are but a dream. But that he has an underlying medical condition making his autism worse, I have little doubt. Equally, there must be some treatment that can improve his symptoms, even if the potentially high stakes make chelation something I could not subscribe to for him.

After all, he was fine as a baby and there was nothing wrong with his eye contact until he began to disintegrate at 17 months of age losing his speech and ability to learn. His sleeplessness, screaming and serious stomach problems were too easily dismissed as part and part parcel of his autistic condition, it seemed to me.

In my desperation for some sort of treatment, I reckon I must have forked out thousands over the years on a fair amount of quackery, the odd snake-oil salesman and heaps of horse-pill sized nutritional supplements that largely remain untouched in their boxes. I've shipped off samples of urine and faeces via courier to the US for analysis, and dragged my son in to see more alternative practitioners wielding pendulums, crystals and chakra charts than I can recall.

Other than liberating me of some hard earned cash, has all this achieved much? Most probably not. But in honesty, it's hard to tell if something is helping: living with such a kid is a roller coaster ride, so if you want enough to believe that something is working, then you can probably see it.

We need hard evidence of what works for these children. Of course, it is not an option to conduct double-blind clinical trials for every whacky cure. But trials of a selection of the better reasoned options should be supported - the gluten- and dairy-free diet, anti-fungal medication for gut problems, and vitamin and mineral supplements such as B6, zinc and magnesium.

I'm also conscious that, in the absence of firm research, any pill or potion I give to my child is largely experimental. So is this all too risky? In my son's case, it's unlikely: he shares the autistic trait of being a very fussy eater. So soil-derived probiotics resembling garden compost or blue-green algae soon end up in the dustbin.

I was handed pots of substances labelled "Sano-Gastril", "L-Arginine"and "N-Acetyl-L-Cysteine" after consulting one of a chain of nutritionists set up specially to treat autistic children. These supplements still have the labels "sealed for your protection" intact around each lid. I needed more convincing that the analysis of one urine sample done in the US could really tell so much about the defects in my son's "metabolic pathways" to ensure that giving him these would definitely help.

Another multivitamin compound formulated for autistic children, known as Super-Nu-Thera, listed its daily dose as containing 25mg of vitamin B6, though the Royal Phamaceutical Society of Great Britain has expressed reservations about any B6 preparation containing more than a 10mg daily dose. According to the British National Formulary, there are concerns about possible toxicity resulting from long-term use.

Yet without these products and procedures my son now radiates better health and is calmer. His speech may still be very limited and his behaviour considered bizarre, but he enjoys life and has no sign of the eczema that blighted him in the past. The chance to go to a school that gives him one-to-one behaviour therapy and teaches him to speak has obviously helped.

There are some "treatments" that have been worth the trouble, and they are the ones that have come from advice that has cost least. The gluten and dairy-free diet recommended by a parents' group, Allergy Induced Autism, does seem to have been beneficial in Thomas's case, calming him down and stopping his diarrhoea. That he showed up positive in proper tests for coeliac disease, an allergy to gluten, demonstrated that there was a medical reason to restrict what he eats.

It also helps to talk things through with an NHS consultant paediatrician who doesn't think what you are trying do for your child is totally crackpot. The support of a specialist (consulted on a private basis but at a modest sum), who has a particular interest in gut problems and autism, has encouraged my more sensible treatment choices.

I now give Thomas individual supplements at reasonable doses for his vitamin and mineral deficiencies as identified by blood tests done at a reputable laboratory. There's nothing too outlandish about that.

From my experience, I would say it is time for the NHS to develop well researched treatment protocols for autistic children, including provision of blood testing for some potential deficiencies. It is when the health system seems to close its doors for puzzling conditions such as autism that desperate parents are pushed to the medical margins in their search for "cures".

www.guardian.co.uk/g2/story/0,,1559542,00.html

The earlier report on the boy dying from chelation:

Autistic boy dies after US therapy visit

Alex Kumi
Friday August 26, 2005
The Guardian

An autistic boy who travelled to the US to undergo a controversial treatment for his condition has died.

Abubakar Tariq Nadama, five, died after receiving his third treatment of chelation therapy, which some believe may cure the neurological and developmental disorder.

The boy, who died on Tuesday, went into cardiac arrest following the intravenous treatment, which is designed to remove heavy metals from the body, a coroner in Pittsburgh, Pennsylvania, confirmed. A police investigation has been launched.

The child's mother, Marwa Nadama, said she did not blame the therapy for Abubakar's death, but was awaiting autopsy results.

Former neighbours of the family in the village of Batheaston, Somerset, have said that the parents had been keen to find a way to treat their son's condition.

Abubakar had moved from Britain to the US with his mother, 11-year-old sister and grandparents in the spring to undergo the treatment.

His father, Dr Rufai Nadama, a specialist registrar in respiratory medicine for Plymouth Hospitals NHS Trust, remained in England. He is now thought to have travelled to America.

Batheaston residents have described the lengths to which the family, who are believed to be Nigerian, went in a bid to deal with the child's illness.

Brenda Drewett, 69, an auxiliary nurse, told the Daily Telegraph: "Carers came in three times a day to look after him. The boy's mother was very concerned that he should get some treatment. They found out that treatment was available in America."

Autism has been linked to a mercury-containing preservative once commonly used in childhood vaccines. Those who believe in this connection sometimes advocate chelation therapy.

The treatment involves an intravenous injection of ethylene diamine tetra-acetic acid (EDTA), a synthetic amino acid that connects to heavy metals in the body and is then passed out of the body through urine.

The US Food and Drug Administration has given the go-ahead to this approach but only for the treatment of acute heavy-metal poisoning that is confirmed by blood tests.

But critics say the treatment is risky and there is a lack of evidence to link autism to mercury or lead toxicity.

www.guardian.co.uk/uk_news/story/0,,1556900,00.html
 
Could have easily gone in some kind of IQ thread but this will do at least as well - it does highlight the problems with measuring intelligence though (if it can be done at all):

The Case of Mistaken IQ

By Mary Beckman
ScienceNOW Daily News
20 February 2006

ST LOUIS, MISSOURI--Most autistics are mentally retarded, according to the prevailing wisdom. But new research shows that their measured IQ could be off by 30 to 90 percent. The results support the idea that autistic people process information differently than healthy individuals.

Estimates for the prevalence of mental retardation in autistic children and adults range from 25 to 70 percent or more, and when autistics do exhibit phenomenal skills (like Rain Man), researchers don't consider that "true" intelligence. Health workers routinely assess autistics using a standard IQ test known as the Wechsler test. But this test requires that children understand oral commands, a trait that many autistic children have trouble with. Cognitive neuroscientist Laurent Mottron of the Hôpital Rivière-des-Prairies, Montreal and colleagues noticed that autistic children did poorly on the verbal comprehension part of the Wechsler but exceedingly well on a part that tests non-verbal intelligence and reasoning.

So the researchers decided to test 30 autistic children and 30 autistic adults with a different IQ test called the Raven's Progressive Matrices test, which is written rather than oral. Healthy children and adults performed similarly on both the Wechsler and the Raven test. But speaking autistics scored up to 30 percentile points higher on the Raven test than the Wechsler test, the researchers reported here 19 February at the annual meeting for the American Association for the Advancement of Science (which publishes ScienceNOW). "Thirty percentile points could raise a retarded person to normal or a normal one to a superintelligent one," says Mottron.

He also tested a mute autistic, often considered to be among the lowest functioning of those with the condition. The adult failed the Wechsler, predictably, but scored above the 90th percentile on the Raven test. Researchers know that healthy people perform the Raven test using verbal skills (for example, people who can't comprehend language do poorly on it), and Mottron suggests that autistic people may be using different skills to get the job done, such as visual perception. This idea is further supported by brain imaging studies in which healthy people use linguistic areas of the brain for problem solving while autistics use their visual processing areas.

Other autism researchers find the results illuminating. "People assume that children suffering from autism are mentally retarded, but that's because we did not know how to evaluate their talent," says behavioral geneticist Irving Gottesman of the University of Minnesota in Minneapolis. The data appear to be robust and representative, says cognitive scientist Morton Gernsbacher of the University of Wisconsin, Madison. "It has far reaching implications for how we could potentially be underestimating the core competence of many individuals."

http://sciencenow.sciencemag.org/cgi/co ... 2006/220/1
 
Mighty_Emperor said:
"This guy reckons that people with Aspergers may be the future of the human race."

It's been suggested previously that various of the spectrum neuroses may be evolutionary advances which the people affected by them don't yet quite know how to handle.
 
Inside the autistic mind

New research, understanding lifting veil on mysterious condition

Sunday, May 7, 2006; Posted: 12:39 p.m. EDT (16:39 GMT)

The road to Hannah's mind opened a few days before her 13th birthday.

Her parents, therapists, nutritionists and teachers had spent years preparing the way. They had moved mountains to improve her sense of balance, her sensory perception and her overall health. They sent in truckloads of occupational and physical therapy and emotional support.

But it wasn't until the fall of 2005 that traffic finally began to flow in the other direction.

Hannah, whose speech was limited to snatches of songs, echoed dialogue and unintelligible utterances, is profoundly autistic, and doctors thought she was most likely retarded.

But on that October day, after she was introduced to the use of a specialized computer keyboard, Hannah proved them wrong. "Is there anything you'd like to say, Hannah?" asked Marilyn Chadwick, director of training at the Facilitated Communication Institute at Syracuse University.

With Chadwick helping to stabilize her right wrist and her mother watching, a girl thought to be incapable of learning to read or write slowly typed, "I love Mom."

More than 60 years after autism was first described by American psychiatrist Leo Kanner, there are still more questions than answers about this complex disorder. But slowly, steadily, many myths about autism are falling away, and researchers are finding some surprises.

Autism is almost certainly, like cancer, many diseases with many distinct causes. It's well known that there's a wide range in the severity of symptoms --from profound disability to milder forms like Asperger syndrome, in which intellectual ability is generally high but social awareness is low.

Indeed, doctors now prefer the term Autistic Spectrum Disorders (ASD). But scientists suspect there are also distinct subtypes, including an early-onset type and a regressive type that can strike as late as age 2.

Once thought to be mainly a disease of the cerebellum, a region in the back of the brain that integrates sensory and motor activity, autism is increasingly seen as a pervasive problem with the way the brain is wired.

The distribution of white matter, the nerve fibers that link diverse parts of the brain, is abnormal, but it's not clear how much is the cause and how much the result of autism.

The immune system may play a critical role in the development of at least some types of autism. This suggests some new avenues of prevention and treatment.

Many classic symptoms of autism -- spinning, head banging, endlessly repeating phrases -- appear to be coping mechanisms rather than hard-wired behaviors. Other classic symptoms -- a lack of emotion, an inability to love --can now be largely dismissed as artifacts of impaired communication. The same may be true of the supposedly high incidence of mental retardation.

The world of autism therapy continues to be bombarded by cure-of-the-day fads. But therapists are beginning to sort out the best ways to intervene.

And while autism is generally a lifelong struggle, there are some reported cases in which kids who were identified as autistic and treated at an early age no longer exhibit symptoms.

Indeed, most researchers believe autism arises from a combination of genetic vulnerabilities and environmental triggers. An identical twin of a child with autism has a 60 percent to 90 percent chance of also being affected with the disorder. And the sibling of a child with autism has about a 10 percent chance of also having it.

Luckily for Hannah, her voice and thoughts are being heard.

Since learning to type, she has begun to speak a few words reliably -- "yes," "no" and the key word "I" -- to express her desires.

All this seems miraculous to her parents. "I was told to give up and get on with my life," says her mother. Now she and her husband are thinking about saving for college.

------------
Click hereexternal link for the entire cover story on Time

Copyright © 2006 Time Inc.

www.cnn.com/2006/US/05/07/cover.story.tm/
 
Scary:

An Army of one wrong recruit

Autism - The signing of a disabled Portland man despite warnings reflects problems nationally for military enlistment

Sunday, May 07, 2006
MICHELLE ROBERTS

Jared Guinther is 18. Tall and lanky, he will graduate from Marshall High School in June. Girls think he's cute, until they try to talk to him and he stammers or just stands there -- silent.

Diagnosed with autism at age 3, Jared is polite but won't talk to people unless they address him first. It's hard for him to make friends. He lives in his own private world.

Jared didn't know there was a war raging in Iraq until his parents told him last fall -- shortly after a military recruiter stopped him outside a Southeast Portland strip mall and complimented him on his black Converse All Stars.

"When Jared first started talking about joining the Army, I thought, 'Well, that isn't going to happen,' " said Paul Guinther, Jared's father. "I told my wife not to worry about it. They're not going to take anybody in the service who's autistic."

But they did. Last month, Jared came home with papers showing that he not only had enlisted, but also had signed up for the Army's most dangerous job: cavalry scout. He is scheduled to leave for basic training Aug. 16.

Officials are now investigating whether recruiters at the U.S. Army Recruiting Station in Southeast Portland improperly concealed Jared's disability, which should have made him ineligible for service.

Jared's story illustrates a growing national problem as the military faces increasing pressure to hit recruiting targets during an unpopular war.

...

More:
www.oregonlive.com/search/index.ssf?/ba ... xml&coll=7
 
This should be taken with caution. As mental illness becomes an industry, diagnosis rates shoot up. RE: aspergers above. The female version, I believe, is called Retts syndrome. Note: the symptoms for mild aspergers can improve with age (I did a bloody project on this and, for the life of me, cannot think of the famous doctor who had aspergers - for interest, she is female too), thus open mike hearing etc can get 'turned' off. It is far too hard to classify autism easily, especially when clinical psychologists are given perhaps a few paid hours to make a decision; it must be remembered that it is a spectrum disorder. Rather than classifying, it makes more sense to establish educative needs at an early age (or as early age as possible). For those wanting a text book that introduces one gently to such problems, refer to Weiner and Kerig's Psychopathology.
 
GadaffiDuck said:
(I did a bloody project on this and, for the life of me, cannot think of the famous doctor who had aspergers - for interest, she is female too)

That would be Temple Grandin.
 
crunchy5 said:
I heard this on the rad this morn so looked it up
* Massive rise in number of secondary pupils with autism in past six years

When I was at school, those termed autistic would not be attending alongside us because their illness was so profound that they could not have attended.

Do schools provide the required care now? or is it that autism is diagnosed more frequently, and now seems to cover a wider range of the illness?
 
AMPHIARAUS said:
crunchy5 said:
I heard this on the rad this morn so looked it up
* Massive rise in number of secondary pupils with autism in past six years

When I was at school, those termed autistic would not be attending alongside us because their illness was so profound that they could not have attended.

Do schools provide the required care now? or is it that autism is diagnosed more frequently, and now seems to cover a wider range of the illness?

Some parents will go to great lengths to see that their children get the diagnosis they want to hear and a Statement of Special Needs. The expertise of teachers has been wholly and systematically undermined but the Education Business - and maybe society as a whole - places an enormous trust in the mysteries of medicine. Money follows a diagnosis by a doctor as opposed to Sweet Bugger All for most purely educational needs.

Parents and schools seek the tit of Special Needs funding. If you don't have a certain proportion of SN kids, you may find holes in your budget. Special Schools can be closed and real expertise lost but the mantra of Inclusion is a hard one to counter.

The cost is to the kids who model their own behaviour on the freak shows they witness too often. I have seen some seriously disturbed children included in mainstream schools, just as I've seen some lost souls undergoing Care in the Community. The latter are a danger only to themselves usually. :(
 
JamesWhitehead said:
AMPHIARAUS said:
crunchy5 said:
I

Some parents will go to great lengths to see that their children get the diagnosis they want to hear and a Statement of Special Needs. The expertise of teachers has been wholly and systematically undermined but the Education Business - and maybe society as a whole - places an enormous trust in the mysteries of medicine. Money follows a diagnosis by a doctor as opposed to Sweet Bugger All for most purely educational needs.

Parents and schools seek the tit of Special Needs funding. If you don't have a certain proportion of SN kids, you may find holes in your budget. Special Schools can be closed and real expertise lost but the mantra of Inclusion is a hard one to counter.

The cost is to the kids who model their own behaviour on the freak shows they witness too often. I have seen some seriously disturbed children included in mainstream schools, just as I've seen some lost souls undergoing Care in the Community. The latter are a danger only to themselves usually. :(

You echo the sentiments of my gf (a teacher) we spoke about this earlier inclusion can be read as cost saving, typical short term cost saving in which the whole of society looses. :x
 
Gadaffi Duck, I did a project on Aspergers too, and I don't remember ever reading that it had a different name in females.....where did you get that information from? I'm curious?
 
Last edited by a moderator:
Clinical/developmental psychology authors(from the USA) - good first/second year undergraduate text book (actually, a better text book for psycholpathological development). Even though very American in style, which will annoy older UK readers, the info is good in an introductory manner; reasonably well explained and detailed enough to provide knowledge for further reading.
 
Possibly. Its been two years since I studies their work in depth... :oops:
 
Most of the autism experts that I know seem to see it as a different type of thing. Mainly because many still view autism (still!) as a form of extreme male brain. I passionately believe in socialisation (enforced rigorously if necessary). If you want to research the following, please do, but be warned it is quite nasty. There is a terrible form of autism. Children by two or so, suddenly exhibit (well over a brief period anyway) every single possible symptom involved. It is horrible. They effectively decay. Don't read it late at night... :cry:
 
Isnt that normal for two?

(has never met a two year old and tends to treat them with susopicion)
 
Sadly no. Effectively all cognitive processes break down. It's really distressing. I had to do an indepth presentation on autism and felt, when I read about this, that I had to explain in detail. It was considered too detailed for my course, but I argued that was incorrect. My lecturers liked me and gave me mucho leeway. 8)
 
Rett syndrome does not sound at all like mild asperger's to me. Most women with Rett's cannot talk at all and many are non-ambulatory. So I would not think that a person capable of posting on this list would have Rett's. I could be wrong tho I'm just a lowly research assistant. ;)
 
Well, as a research assistant I would've thought you would know that autism, under which label you proscribe, is a SPECTRUM disorder.
 
Well, for starters, I'm not a research assistant in psych. heh.

Yes, I know that autism is a spectrum disorder, meaning I that there are people with different degrees. But from what I read about Rett's it sounded very serious and not something one might encounter in a mild form. However, see above. Have you encountered people with very mild Rett's? I could easily stand corrected. Repeat, see above.

You should check out the picture of Dr. Asberger himself on Wikipedia and then read his bio! A veritable poster boy for very mild autism w/giftedness.
 
Last edited by a moderator:
Back
Top