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Is autism a 20th century "disease"?

Submitted by an LD OnLine user on

UPI Launches New Series: The Age of Autism

[By Dan Olmsted.]
http://www.upi.com/view.cfm?StoryID=20050126-113404-1472r

UPI - They were born within four months of each other, Fritz V. in June of 1933 and Donald T. that September. Fritz was born in Austria, Donald in Mississippi, but they had a surprising amount in common.

Unfortunately.

When Donald was taken by his beleaguered parents to Johns Hopkins University in 1938, he acted like no 5-year-old that famed child psychiatrist Leo Kanner had ever seen.

“He learned my name,” Kanner recounted decades later, “but he would never see me if he met me because he would never look up enough and had enough eye contact to recognize faces. … Also, while he spoke, it was not for communication, and if in order to satisfy his needs some communication was needed, he would not be able to distinguish between I and you, rather echoing religiously some of the things that he was interested in.

“For instance, if he wanted his milk, he remembered constantly that his mother always asked him, ‘Donnie, do you want your milk?’ And his way of asking for milk was ‘Donnie, do you want your milk?’ Well, this was only a part of some of his peculiar behavior.”

Yet strangely, by age 2 1/2 he could name the presidents and vice presidents of the Unites States backwards and forwards and recite the 25 questions of the Presbyterian catechism.

Fritz made an equally vivid impression on Hans Asperger, the pediatrician who first saw him in 1939 at age 6 in Vienna. Asperger described him as “a highly unusual boy who shows a very severe impairment in social integration. … His gaze was strikingly odd. It was generally directed into the void.”

In school, “He quickly became aggressive and lashed out with anything he could get hold of (once with a hammer). … Because of his totally uninhibited behavior, his schooling failed on the first day. … Another strange phenomenon in this boy was the occurrence of certain stereotypic movements and habits.”

As with Donald, “The content of his speech was completely different from what one would expect of a normal child,” Asperger said of Fritz. “Only rarely was what he said in answer to a question.”

Yet weirdly, he started speaking at 10 months and soon “talked like an adult.”

Donald T. and Fritz V. — last names were never given — have endured in medical literature because they are firsts. Donald was the first to confront Kanner with the behaviors that he later named “autism.” Fritz was the first case study of what came to be known as Asperger’s Disorder. Both conditions are now classed in the official U.S. guide to mental problems as Pervasive Developmental Disorders, and are also called Autism Spectrum Disorders. (Autism derives from the Greek word for self, “autos,” as in autobiography.) Most experts think the disorders are related, with autism the severe manifestation; Asperger’s is sometimes referred to as “autism lite” or “a dash of autism” and is differentiated by a lack of delay in language development.

Kanner’s study of Donald and 10 other children was titled “Autistic Disturbances of Affective Contact” and was published in the journal “Nervous Child” in 1943. Asperger called his study of Fritz and three other children “ ‘Autistic Psychopathy’ in Childhood”; it was published in “Archiv fur Psychiatrie und Nervenkrankheiten” in 1944.

Kanner described autism’s defining features as “extreme aloneness and a desire for the preservation of sameness.”

“The children seemed to live in a static world in which they could not seem to tolerate any kind of change introduced by anybody but themselves,” Kanner said in a 1972 speech, “and even that didn’t occur very often.”

“The autist is only himself,” Asperger wrote, “and is not an active member of a greater organism which he is influenced by and which he influences constantly.”

Kanner and Asperger did not collaborate on their studies. Nor did either predict the deluge that would follow: In the United States, a reasonable estimate is that 30 or 40 children out of every 10,000 are diagnosed with autism, and another 30 or 40 are diagnosed with other Pervasive Developmental Disorders, including Asperger’s. [NOTE: THESE STATS REFER TO RECENT ESTIMATES, NOT ESTIMATES FROM KANNER’S TIME]

This leads to a simple but significant question: Was it coincidence that the first few cases of these strikingly similar disorders were identified at the same time, by the same term, in children born the same decade, by doctors thousands of miles apart? Or is it a clue to when and where autism started — and why? The question reflects a huge, and hugely important, debate. If autistic children always existed in the same percentages but just weren’t formally classified until the 1940s, that would suggest better diagnosis, not a troubling increase in the number of autistic children.

But if autism had a clear beginning in the fairly recent past (a past so recent that Fritz and Donald could both be alive today at age 71), then the issue is very different. That would suggest something new caused those first autism and Asperger’s cases in the early 1930s; something caused them to increase; and something is still causing them today.

This ongoing series will look for answers by tracking the natural history of autism around the world — a road less traveled than one might think. For example, Asperger’s study was not translated into English until 1994 — a half-century later — and still is not easily available; actually reading Asperger’s account of Fritz V. makes you realize the severity of his disorder and its similarity to classical autism.

“The reader of Asperger’s first paper cannot fail to be impressed by the close similarities to Kanner’s case descriptions and the relatively few differences,” wrote British psychiatrist Lorna Wing in the 1994 anthology “Autism and Asperger Syndrome,” which includes the first English translation. The translator, Uta Frith, noted, “By a remarkable coincidence, Asperger and Kanner independently described exactly the same type of disturbed child to whom nobody had paid much attention before and both used the label autistic.”

Both said that autistic children were impossible to miss.

“Once one has properly diagnosed an autistic individual one can spot such children instantly,” said Asperger. “It is a unique syndrome,” said Kanner, “and almost photographically not identical, but similar.”

Yet Kanner was clear that he never saw an autistic child until he met Donald T. in 1938 — 17 years after he got his medical degree in Berlin on his way to becoming one of the world’s leading psychiatrists, to whom the toughest cases were often referred “all the way to the great Hopkins,” as he jokingly put it.

In fact, his landmark 1943 paper begins, “Since 1938, there have come to our attention a number of children whose condition differs so markedly and uniquely from anything reported so far, that each case merits — and, I hope, will eventually receive — a detailed consideration of its fascinating peculiarities.”

Markedly, uniquely different: The great psychiatrist at the great Hopkins believed he was seeing something new.

Next, we’ll look at the oldest of Kanner’s patients, the one whose birth might mark the start of the age of autism. Her name was Virginia S.

(This series intends to be interactive with readers and will take heed of comment, criticism and suggestions. e-mail: [email protected])

Submitted by des on Tue, 02/15/2005 - 3:12 AM

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Well I don’t know dad. I think this is an area that we disagree on. But as a young adult I worked in a few facilities for MR adults (it was still the 20th C). I had several clients that I’m pretty sure were autistic, but the point is that they were dxed MR. No one made any comments that they were at all unusual. I also worked at a center for autistic adults that was the first one in the city. There were several people dxed as childhood schizophrenia. They were indistinguishable from the clients labeled as autistic. Nowadays you seldom see someone with that dx. (I’m not sure how valid anyone considers it.)

The other thing is that I worked in a day training center for autistic adults (also first center in that state). The older ones were white, came from middle income or upper middle income families (in fact, it came to be kind of an issue with the state— even though the director and program manager were black they said it seemed that we had discriminatory policies!! Anyway all had had multiple dxes, and it was only that the parents knew something was different that they tried to get the autism dx. (Of course, sadly this was in Chicago and all had met up with Bruno Bettleheim or friends of). OTOH the younger clients were from various backgrounds and diverse racially and some were low income. They had autism as the first dx, often from a young age.

I am pretty sure I had Asperger kids in ld classes circa the 1970s and 80s. It was not dxed.

This all is anectodal but implies to me that some of this lack of notice was due to not really knowing what they were looking at. However the article you mention is also anectodal.

—des

Submitted by victoria on Tue, 02/15/2005 - 4:32 AM

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I posted a while ago about a headline that women with asthma, allergies, and psoriasis are more likely to give birth to an autistic child.

It has been noted over the past couple of decades that there is an epidemic of asthma, and this in turn has been connected to changes in our environment, especially chemicals, and our lifestyle, too much indoors with the chemicals and too little exposure to nature including too little natural dirt - causing improper development of the immune system.

A connection between asthma in mothers and autistic children, and an epidemic of asthma, add up to a reason for the extreme increase in cases of autism over the past few decades. I see a possible smoking gun here.

None of this negates the possibility of heavy-metal contamination also being involved — the auto-immune effects could make a person more sensitive to heavy metals.

I agree with des; there probably always has been a low level of incidence of autism, and most of these people probably were either not diagnosed, or were diagnosed under some general category such as MR. Reports of autistic savants, formerly called idiot savants, go a long way back in history.
The change in the 1930’s was a greater interest in psychology and an effort to diagnose and classify people more rigorously. Prior to that time there were almost no doctors of psychology, it was not a recognized field of study in most areas, so such diagnoses could hardly be made.

The question now is not whether this is a new syndrome, but rather what is the cause of the continuing increase.

On the chemical issue, there was a report last night on flame retardants (I think the acronym is PBDE’s). In animal tests these are connected to problems with brain development and reproductive hormones. Apparently Canada now has the world’s second-highest levels in humans — I presume the US is the highest. It was said the levels in human samples taken thirty years ago (they tested old blood) were essentially zero, and now they are very high, and doubling in less than five years. In Europe, these chemicals were banned a decade ago, but unfortunately this time Canada has followed the FDA lead and has simply defined the present levels as “safe”.
Just as I type this, another report on the same subject: Although they are in food, the main source for human contamination appears to be house dust, 90% of the source for toddlers. Indoor contains ten to twenty times the levels in outdoor air. Some people have much higher levels than others; a few are turning up with levels as high as those that cause damage in animals. Canada is trying a voluntary phaseout of these chemicals by industry (I am not holding my breath.)

Once more it seems that Grandma was right and the “experts” were wrong:
“Go outside and play in the fresh air!”
“Kids need to play outdoors — a little rain won’t melt them!”
“There’s nothing wrong with a little good clean dirt.”

Submitted by Dad on Tue, 02/15/2005 - 6:38 AM

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One of the things I think that we do (and bear in mind that it has been nearly 70 yearrs now since Kanner/Asperger did there work) is we fail to appreciate that people way back when could understand whether they were seeing something “new” or not. I have argued that Kanner’s use of the phrase “whose condition differs so markedly and uniquely from anything reported so far” is extremely highly suggestive that there was indeed nearly no historical precedence for autism prior to the last century.

I agree that until recently many less-than-studious/experienced psyches and other profesionals may well have not recognized autism as such and used the more generic labels of MR or possibly psychotic. But it does stretch things quite a bit to go from that to no one recognized autism.

I understand that much of “head science” was still in its infancy in the 30’s and 40’s and that even today we have highly paid and self-important professionals who get things wrong. Still, autism does present a collection of observable behaviors that are so strikingly signature that they have become diagnostic criteria - the avoidance of eye contact, the sterotypic behaviors, stimming, (often extreme) resistance to transition, echolalia in place of expressive communication, and meltdowns. When taken together they present a package that is so unique that even lay persons who have had experience with a single child (often their own or other relative they are closey familiar with) can become diagnosticians who are very accurate and can pick out autists by simple observation in casual settings (the playground, the mall, wherever).

How is it possible that when Kanner called these 11 children he saw over 5 years (and from all over the Eastern US) as having a “new” disorder that no one in his profession called his bluff and showed where they new of even a single patient who pre-dated Kanner’s kids? Science of all disciplines has a long tradition of colleagues haranguing anyone who tries to lay claim to discovering something “new”.

And with only a few exceptions (feral children), historical documents are remarkable free of descriptions of kids or adults who present the anticipated behaviors of autism which would allow us to posthumously recognize them as autists or Aspies. Certainly some researcher should have benn able to show historical documents which described these children in terms that we could say “that is an autist”. After all, we can easily pick out descriptions of nearly all other disorders and syndromes going back hundreds of years despite the absence of modern psychology or record keeping. Please also bear in mind that until very recently, people with full-blown autism were most often placed into residential at a young age (9 of Kanner’s 11 were in residential before age 12), and that residential living, although not very widespread compared to the mid 1900’s, did indeed begin several hundred years prior, at least for middle and upper class people in Western Europe and then the US.

If we accept the apparent breakthrus of Kanner and Asperger as being genuine, that would place the beginning of autism/Asperger’s as being the 1930’s. This give us a time period to examine environmental factors and see what we introduced to our collective lives at about this time in history that we could use as a basis to begin more intensive examination of cause and effect. Indeed, this is the very reason that vaccines have been targeted by so many; Diptheria was begun in 1931 and Pertussis in 1936; both contain thimerosal (altho I personally believe very strongly in the direct tie-in betwenn TCV’s and autism I do allow that some other, as yet unknown trigger could indeed be guilty).

Des, I understand what you are saying, but I must press the point and ask are you older than 90 and/or how many of the misdiagnosed adults you recall as being autistic would have been born prior to the 1930’s? I am not challenging you recollection; long time posters here may well recall a piece I wrote back in ‘99 about my own recollection of knowing a pair of autists I rode the bus with when I was in 6th grade who were simply called “retards” then.

Victoria, I agree that as we learn more about autism we will probably confirm that it is indeed an auto-immune “disease”. I also do not think it will have a sole triggering factor (i.e. heavy metals) or else we would almost assuredly have a greater historical reference for autism (the Romans for instance used lead water pipes and had mercury in medical concoctions and we have examples of Roman physicians who did indeed keep pretty good records, better than we kept until about the Victorian Age, Galen being one). I think you are correct that PBDE’s will be found to have a tie-in to a host of conditions due to the wide-spread exposure and its as yet unrecognized threat to our CNS.

Still, we must not loose sight that the science of toxicology is built on the predicability of the reaction the body has to specific poisons and the science of pathology of the predictability of disease. This is how forensic and medical science work, and tho there are and will always be some exceptions to the rules, by and large the rules do indeed hold once we have them defined.

It will be interesting to see how the UPI series plays out. So many of the pieces on autism I have seen or read in the last 5 years have simply benn “101’s” rehashed. I hope that the producers of this piece delve just a bit deeper and perhaps give us some new tidbits of credible data to further our understanding of what appears to be a rather recent phenom.

For those on board who wonder at my (near psychotic) fixation on this topic and posting of it here (after all, autism is not an LD is it?) I will appologize and say that you are indeed free to agree/disagree with me, to holler at me for clogging board space, or to scroll on by as you see best fit. If the CA numbers hold true for the rest of the developed world, autism is now the most prevalant of the profound cognitive conditions, and with no end yet in sight. Full-Spectrum is flirting with 1% (actually over 1% in males) and if cause is not recognized and eliminated may indeed close the gap with more common conditions such as ADD/ADHD and Dyslexia.

Submitted by des on Tue, 02/15/2005 - 7:12 AM

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To be honest, Dad, I have wondered at your obsession on this as there are autism boards. :-) I’m not upset though. And I don’t care re the bandwidth because I am a bandwidth hog if there ever was one, I could hardly complain about others. And of course AS is quite similar to NVLD— there is no doubt quite a lot of overlap, and I have never heard of AS people who have 0 other learning disabilities. At least I have never met any.

No I am not 90, and yes, I am writing from a 20th C perspective, the thing I was pointing out was that the folks I worked with were NOT dxed as autistic or when they were the dx was not fast in coming. Many of the adult students had several dxes and no one got it on the first shot. (Unlike some of the younger students.) You had to be pretty well-off to get the dx in the first place. And there were other dxes: childhood schizophrenia. And as for Aspergers, I never heard of it until fairly recently. I certainly didn’t get that dx as a child. (I was a wierd kid— the playground is such a good place for dxes!) Fellow students and former students of mine, were almost certainly AS. Nobody referred to them that way.

One could argue there is more autism. I wasn’t going to get into that. But the idea that autism suddenly developed in the 20th C. As Victoria says there were cases of “Idiot Savants”. I think that these were outside interesting cases that came out of a population of institutionalized “mental defectives” some of whom were not retarded at all. True the kids are pretty unusual and unmistakable (to us). But in the 19th C, I think if the kid was at all unusual in the institution they went. There were few kids who were actually studied or given the time of day. Also if kids are institutionalized and given little stimuli eventually they will ALL look autistic, so far from the very unusual behavior it would have been the norm. (Have you seen the tapes of totally normal kids from Russian, Chinese, Romanian “orphanages”. They certainly resemble autistic kids.)

I can’t account for Kanners’ epiphany, but I will say that sometimes you can see something all your life and then it hits you. And my guess is it hit him fairly suddenly.

BTW, I recall a syndrome they used to talk about in ld classes at college and it was FLKs. This is really going to sound awful but maybe someone recalls this as well. That once in awhile you had a ld kid that looked a certain way. We now know this as Fetal Alcohol Syndrome. No one discussed the characteristics that appear to go with this.

—des

Submitted by geodob on Tue, 02/15/2005 - 8:50 AM

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Des, in response to your mention of Fetal Alcohol Syndrome, I recently came across another one: Fetal Cocaine Syndrome.
Though to add to Autism and Autism Spectrum, we also have the broad spectrum of Non Verbal Learning Disorders, as well as at least 8 different forms of Dyslexia. Where the consequent learning difficulties, often result in students being classed as having Behaviour Problems. In turn they are often classed as having ADD or ADHD.
Though I would suggest that the real problem is with these Categories, which are as real as the Average Person? Where the categories are more concerned with convenience for the Professionals and Govt, than for the Individual.
In this regard, I am aware of people ‘faking’ specific problems, so as to recieve a diagnosis that will place them within a certain category, for which their relevant Govt Dept has allocated Funding.
These Labels are all a matter of convenience, rather than genuine concern for the individual.
geodob

Submitted by victoria on Tue, 02/15/2005 - 8:58 AM

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Well, Dad, I just recently saw a fascinating PBS show caled “The Lost Prince”. It was about the uncle of Queen Elizabeth, her father’s younger brother, Prince John. If you haven;t heard of him, there is a reason. He was born sometime in the Edwardian era, around 1900, well before the time you are discussing. He was apparently both autistic and epileptic.

At that time almost any family preferred to keep such disabilities hidden, and of course for the royal family it was a huige problem, with their lives lived in public and the high expectations for diplomatic behaviour. Also there were no medications for the epilepsy, which was exacerbated by stress, so the only thing to do was to try to keep him calm and quiet and out of the world. Prince John was separated from the family and given a cottage to live in where he and his staff were kept well away from the public.

Oddly enough, I recently also saw some actual historic photos of Prince John, and some letters from him, on another program; apparently the biographical show was quite well researched. His behaviours were distinctly “odd” in the same way autistic behaviours are “odd”, but the disorder was not separated out from other disorders at the time.

I agree with des that a small number of autistic people could well exist in the hidden population and institutional population without their behaviours being singled out as any different from the *other* non-standard behaviours in those groups. Often, things are not seen to exist until they are named and described; this is a truism in the history of science.

As far as Asperger’s and HFA, read the biographies of a lot of “unusual” people in the past, and you start to have your suspicions; I have one book which tells of a wealthy man who arranged his life so that he *never* had to speak to another human being or look one in the face, even having a tunnel dug so he could ride through in a closed carriage without seeing anyone — he was considered eccentric in his time, but now perhaps this avoidance of all social contact might be diagnosed differently.

Dad, I get the prize for taking up bandwidth here and so far nobody has complained too much. Maybe autism isn’t exactly an LD but it seems to fit in with the general mission of the site, so why not. I have found your posts very educational in general. (Some eyebrows raised about your last long post — I think you need to check sources, that one has some serious issues — but that is another question).

Des, again the issue of naming and identifying. As far as I can figure from my reading, autism was often not named as such through the 1960’s and 1970’s; yes, the studies by Kanner and Asperger may have been done and published, but the idea had not filtered down to the great majority of doctors or education workers and not even to many psychiatrists. The syndrome was recognized in some cases, but the same behaviours went by different names. “Childhood schizophrenia” was an accepted name for what is now recognized as autism. I read one book from the late 1960’s where this terminology was used and it is quite clear that autism is what was meant. Common in the history of science, same thing going by different names until a general consensus is reached — see the history of calculus and the Newton/Leibnitz controversy for a classic example.

Submitted by Anonymous on Tue, 02/15/2005 - 3:01 PM

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The last diagnosis of Childhood Schizophrenia that I remember seeing was in, oh, 1979 or 1980. He was an interesting young man just past 20 years of age and he could play the piano and organ. His playing was very mechanical in style, but he actually performed in public from time to time at church and at a local department store tea room.

He was very polite, but extremely shy and he tended to use short responses with little eye contact.

He liked music-related appliances (like wiring stereo systems as such), so I eventually arranged to have him trained to tune pianos and he actually worked some. The problem was that he could not learn to drive and he could not learn to do the simplest of repairs. The only jobs tuning new pianos at piano stores were already taken (by the guy I hired to train him. Oh well, live and learn.) Oh, and even though he had perfect pitch he didn’t trust his skill so we bought him an oscilloscope.

We attempted to steer him in other directions, but he was stuck on music and decided to stay home and care for his mother IIRC.

I also recall that during this period, say ‘74 to ‘80 or so, the higher functioning individuals usually received diagnoses of Minimal Brain Dysfunction. FWIW, I spent all of ‘75 and ‘76 reading Social Security disability claims and deciding who to refer to the state vocational rehabilitation field offices. I was reading about 20k files a year. That works out to around 75 a day plus doing the paperwork.

John

Submitted by Dad on Wed, 02/16/2005 - 2:28 AM

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Victoria, having never before heard of Prince John (and for the obvious reason that most would not have) I was immediately intrigued by the prospect of not only a “famous” autist, but a royal one as well. I do wish that a more credible account of his short life were available online; the first 6 pages of hits I got googling were either movie reviews which vaccillated between saying he had “slight” autism to “possible” autism to an “autism-like learning disability”. The only sites I could find which held stronger assertions were those sites which were either interested in selling the movie or those opinion sites on which anonymous posters of unknown expertise and authority make any number of dubious claims (sorry, but neither Einstein nor Mozart were autistic).

I am of course not saying young John was not autistic, but I do think that the jury should still be considered out on that account. If you (or any others) are aware of information that would be a bit more objective, preferably firsthand accounts of John’s actual behaviors perhaps we could get a better idea of where (if at all) he might fit on the Spectrum. I have no doubt the boy had rather profound seizure disorder; rather hard to miss in a person who had as many as young John did. Of course Epilepsy and autism do not necessarily go hand in hand; only a percentage of autists have seizures (of the dozen and a half autistic kids I have met personally only 2 have epilepsy, 1 grand mal and the other absence seizures) and only an even smaller percentage of epileptics are also on Spectrum.

Submitted by des on Wed, 02/16/2005 - 8:07 AM

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Re: epilepsy and autism. They are DEFINITELY not mutually exclusive. I have read the incidence of epilepsy is higher in the autistic population (but not in the AS population- not impossible there either, just closer to the one in 100 figure for epilepsy). At the last center for autistic adults I worked at, we had a very high incidence of epilepsy. So I am rather surprised at your own anectodal experiences.

I think it is a bit on the hard side to dx post mortem (or even pre- mortem without some actual diagnostic info, childhood background, that sort of thing).

John, re the MBD, that’s the one I had circa the 60s or so. I understand there were some misdxed AS people who were in and out of psychiatric facilities with dxes like borderline, schizoaffective, personality disorder, anti-social tendencies, etc.etc.

I have also read about scientists that had odd behavior traits seems consistent with AS, but others were just odd-NOS. ;-)

—des

Submitted by Dad on Wed, 02/16/2005 - 10:49 AM

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I agree that autism and seizure disorder are not mutually exclusive, but at the same time, one does not depend upon the other to be. I have seen figures on autists that range from 10% to 25% as having epilepsy as well. I do not think at this point we have conducted the quality of study to accurately nail this down, and I also believe that with the (seemingly) high incidence of petit mal seizures that some people (autistic or not) who have mild epilepsy may be left undiagnosed and unaware they have it.

I wish that the people who had conducted some of the better studies (Brick, Atlanta, Rhode Island) would have added a couple of more items to their checklist to have answered some of the questions that were left unasked. Seems such a waste to go thru all the work and expense of conducting a big survey and then not gleaning every scrap of data possible in the process (and the hard work in these is after all in the setting up and finding; the data entry of a few more fields is incrimental at best, and the computers do the work of collating rather quickly).

I have known several epileptics who are NOT on Spectrum as well, including the parents of the child I have met with absence seizures. Both of them had grand mal as children, both took meds for years (although neither is on them now). Their child began seizing over 100 times a day almost immediately after receiving the second round of DPT, but they did not recognize it as such for weeks because she did not shake, she just blanked out for a bit. A very sweet dispositioned child, who of course takes meds to control the seizures; time will tell if maturity allows the meds to be ended like it did for the parents.

Submitted by des on Thu, 02/17/2005 - 7:02 AM

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Generally the more commonplace and generalized (whole brain) the type of seizure (clonic tonic or grand mal) or absence (petit mal), the easier to control and the more likely to outgrow. This isn’t always the case, there are just some really intractable seizures out there. But I have known people to get control of these thru the simple act of changing neurologists.

I’m not sure if anyone knows the exact figures on autism and epilepsy.
And as you mentioned the absense seizures might be hard to recognize.
I’ve heard that many of these are initially suspected by classroom teachers who try to call on such children and they aren’t responding. This would not be a likely avenue for diagnostic purposes in autistic children. (I have sometimes suspected them, but then again I am a bit more experienced in this having them myself. They are actually partial complex.)

—des

Submitted by victoria on Thu, 02/17/2005 - 6:31 PM

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Dad— the coincidences on this topic are getting downright strange. This posting, closely related to the question of autism and epilepsy, just appeared on another thread:

Posted: Wed Feb 16, 2005 9:17 pm Post subject: Landau-Kleffner syndrome

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I worked with a child with Landau-Kleffner last year, and her mom just contacted me wondering about private school placement. She doesn’t really fit the LD profile for a lot of these schools locally (NYC area). They’re open to ideas nationally. Any leads? Thanks so much in advance.

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victoria

Joined: 13 Jun 2003
Posts: 1249
Location: Montreal, Quebec, Canada
Posted: Thu Feb 17, 2005 2:18 am Post subject:

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I have no idea what this syndorm is and what it entails. If you tell us a little more about the causes, symptoms, and needs, perhaps people can make some suggestions.

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mmm214

Joined: 25 Mar 2004
Posts: 34
Location: New York
Posted: Thu Feb 17, 2005 9:41 am Post subject:

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No problem, but there’s a lot to tell. L-K is a form of childhood epilepsy in which the seizures continually impact the language centers of the brain. There are behavioral effects as well. It is often seen in kids who are autistic but this particular child is not. The L-K has affected her auditory processing tremendously. The parents need a school that is sensitive to kids with language issues but also supportive of the behavorial quirks that go along with L-K; maybe a place where very-high-functioning autistic kids are among the population. This girl’s reading deficits are not severe enough for her to qualify for the LD schools with the intensive multisensory reading programs, although she could use a little help in this area. It’s a lot of language processing and behavioral stuff.

Thanks again in advance. Hope this helps a bit.

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SAR
Guest

Submitted by Dad on Thu, 02/17/2005 - 9:46 PM

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One of the “regulars” in my local autism support group has a son who he is convinced has LKS. The doci\otrs he has seen have consistantly brushed him off, saying his son is “just autistic”. I confess I have done zero reading on LKS, so I cannot say that I have an opinion on the matter, nor can I contribute much to a discussion on LKS.

I do think that autism has been/become a sort of catchall of sorts, because it is identified not by a pathology or etiology, but rather by the observable behaviors, which are not a strict checklist, but more of a “buffet dining” (a little of this, none of that thank you, a taste of thqat, and oh yes, a nice helping of that over there, if you follow me). I do not believe this will change any time soon, because the pysches who currently reign over autism wish to remain the experts, while the medical profession by and large is more afraid of what the underlying facts may be than their desire to satisfy any curiousity will allow (that didn’t come off as too flippin’ cynical did it?)

I have seen a great many coincidences in my tenure as a Sped parent, and not all directly related to autism. Some call it fate or destiny, some blind chance. Many times I think it must just be the way the Powers-that-be tweek us to get us looking in the right directions. I believe our cousins from Northern Europe even had a diety for this - Loki.

Getting back to the original gyst of this thread (with, as always, no regrets to the side trips ;)), there is a third possiblity to the question of whether Leo and Hans truly did write up a brand new “state of being” (is that PC enough?)…

There is a possibility that autism has indeed been with us for quite a long time, but prior to some (as yet) unknown occurance or occurances was so mild before the last century that it would not have been remarkable enough to have merited even the limited recognition our ancestors afforded those with LD’s, syndromes and conditions. this could well explain why Lovaas and others can speak of remediation, but critics point out that the successes are still autistic. It could also explain why we can trace autism in our family trees back to “weird uncles” who show some of the classic signs, but were not disabled from it. As the exposure to our herd to the triggering toxins grows greater, more will exhibit the symptoms of profound insult, and today’s children who have full-blown autism at an estimated rate of 1 in 250 may have been yesterday’s very HFA persons who did not quite mesh well with the herd, but still managed to live without the need of complete residential care.

(And just between you, me and the gatepost, is all Lovaas did was to take a LFA child and turn them into a HFA child who could live life free from near infancy dependancy I will still nominate him for hero of the century.) Aw heck, let’s not keep that a secret just between us. Now if only he would have allowed his test kids to have been put on the Diet, been tested for metals and chelated where necessary, and used proper supplements to boost needed vitamins and minerals to improve metabolic function, perhaps he could have achieved 3 out of 4 instead of 1 in2 for a success rate…

Submitted by des on Fri, 02/18/2005 - 6:41 AM

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Well there is a yet another possibility with Lovaas (when it is phenomenally successful that is): there are some autistic children who at 5 or so very much resemble severely autistic children. My nephew was like this. Little speech, lots of stimming, self-injury, etc. With stimulation from mom, but no particularly intensive assistance, he is in high school, has a job, and even a girl friend and was on the honor roll. He does have some special ed. So what if Lovaas gets a kid like this, and he does become high functioning? Of course it is the kind of experiment you really don’t want to do. I’m not implying that ABA doesn’t work but that if you have phenomenal results, the kid has a lot going for him/her in the first place.

As far as the Wild Child of Aveyon, as to whether that is autism or no, well I have heard mixed things abou t that. There are recent cases of kids who were totally socially isolated who act more like the Wild Child case than an autistic child. The kid had amazing adaptive skills (ie throwing the potato in the fire). But no telling I guess. He either had never learned to disregard pain, sound, etc. or he could have been I guess. This was a very thorough record that ANYBODY has ever made of a child. I doubt if any institiutionalized child was ever analyzed as much.

So to me absense of evidence doesn’t mean evidence of absense (as Carl Sagan once said on another subject).

—des

Submitted by Dad on Fri, 02/18/2005 - 11:16 AM

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The only problem I have with the track your nephew took happening on a wide scale is that it flies in the face of what we know about autism. 60+ years of working with growing numbers of children with full-blown autism has demonstrated over and over that unless they have a lifetime of impairment and historically speaking about half get placed in full residential around the time of puberty with the percentage climbing to nearly 90% by the time they are adults due to their extraordinary needs and difficulty of care. (Disclaimer: I will allow for these estimated eprcentages to be artificially high due to our uncertaintyas to the actual number of autists out there regardless of where on Spectrum they fall. There is a good possibility that there are indeed a fair number of these souls living their lives out at home, “locked” in a back bedroom because their families (mom) care too much for them to send them away)

I cannot dispute what you have seen in your nephew, not knowing him, but I do question strongly that it could have ben repeated on a widescale. What has his mother done with him (I am of course intrigued)? Diet? Other bio-medical intervention? Perhaps sometime I may chat a bit with her and see what she can share that has helped her boy advance…

What you have related is not so very different from what has recently been advocated by a small group of very vocal (supposed) adults on Spectrum who are pushing for us to allow all autists to develop as best they can without using “barbaric” intensive interventions upon them. At least one of the ringleaders (M. Dawson) is said to not really be autistic at all by people who have met her. Personally I do not know what to believe about her one way or the other, haviong never met her or the persons leveling that claim against her, but I do find it interesting that she does not have a professional diagnosis at all, and apparently refuses to get one (were she truly autistic clearing up that doubt could only strengthen her position).

Regardless, however noble the “allow us to pursue happiness as we can” may sound, I find it to be a very dangerous position to further, because children with full-blown autism will need some very serious help if they are to advance in cognition, communication and behavior to the point they can avoid the ever uncaring society’s ned for civil order. Failure to help these kids advance dooms a great many of them to residential care, which is too often a completely horrible nightmare of a chemical straightjacket under the care of Nurse Ratchet. I find that a far more frightenting proposition than the stress placed upon a child by 3-5 years “at the little table”. As always, what I advocate for is universal access to proper behavioral intervention regardless of location or ability to pay so we can elevate as many of these wonderous children as possible.

Getting back to the wild boy I posted above… I do not find it so incongruous with what we know of autism. Many autistic children are first taken to be looked at because the parents think they are deaf (lack of attempts to communicate verbally coupled with the averted gaze and ignoring of other people’s verbal prompts). Another common feature is extremely high tolerance for pain (my own boy could have eaten something very hot at age 3 and 4; 2 years of SID coupled with 3 rounds of chelation brought his tolerance level wa-a-a-a-a-ay down into a normal range, which had the added bonus of greatly reducing his “aggressive” actions and his reckless behavior, because suddenly things started to hurt). Many, many autists have extremely limited diets, and his knowing how to roast a potato in the fire is almost certainly the result of how he was shown for years prior how to cook one of the only foods he would eat until it became a rote action as compared to an adaptive one. On and on, the rocking, the use of the mouth before the hands and eyes to identify objects, the hatred of clothing, the type of noises made, the apparent seizures, the careful arrangement of objects, the tantruming when what he wanted was not delivered… were I to use autism as a model for a fictional character I could hardly have done better than the collection of behaviors described here.

Your description of children isolated from nurturing contact mimicing autism was well documented in Eastern European orphanages (they termed it “institutional autism”) and was the basis for Bettleheim’s failed theory (which I know you are not advancing here, but felt compelled to point it out).

As far as to the amount of detail in the reporting, that does not surprise me. Those institutionalized are rarely to be studied; they have reached their end, and since a great many of the institutions in years passed treated their wards as “mad dogs” and either had them in cells or more recentlky in chemical straightjackets there would probably not been so much to study that would be noteworthy. This boy, presumed at the time to be a feral child and most remarkable for his uniqueness in the eyes of his patron would have merited some degree of study and certainly there have been people in years past who made notes equalling these in detail about persons or things that piqued their curiosity. If only more of the feral children had been observed for posterity in such detail we may have had a better understanding of them and whatever state of being they had, and if they were indeed autistic we might be a little more along in our understanding now.

Submitted by des on Sat, 02/19/2005 - 2:36 AM

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>The only problem I have with the track your nephew took happening on a wide scale is that it flies in the face of what we know about autism. 60+ years of working with

The only thing is that I have seen this before. That *some* not AS kids, these are kids that I would call hfa— they have the same characteristics of lfa kids. The thing is that there MAY be some subtle differences. Do they aquire language more quickly? Are their early hx quite the same? I do think that Wing discusses this a bit. Not sure, as I don’t think I have her books anymore. Even Lovaas said, at one pt., that the kids who did extremely well likely did have more going for them in the first place.

But yes, I’d agree that the majority of kids with whom nothign is really done, do not make any significant progress.

>What has his mother done with him (I am of course intrigued)? Diet? Other bio-medical intervention? Perhaps sometime I may chat a bit with her and see what she can share that has helped her boy advance…

I wouldn’t be looking for any miracle cures. No biomedical intervention of any unusual type. He has been on a variety of meds, the usual sorts of things that doctors try, SSRIs, anti-convulsants, etc. THey have not helped him beyond lowering anxiety say. He has been on no diets. (Well his own— his diet was very limited until lately to something like pizza and pasta :-)). He had speech therapy, that I think was of mixed results. He had some sensory integration, nothing intensive. His mom, however, has worked a lot with working to socialize him. Taking him places, preparing him, using Gray’s Social Stories (or her own versions). I had a LOT of interaction with him when he was young, interacting with him in an autistic friendly way. We used to play slinkies together for example.
I think at some point his mom will write a book (I think she is writing one in fact). I don’t think you would be able to find anything new.

>What you have related is not so very different from what has recently been advocated by a small group of very vocal (supposed) adults on Spectrum who are pushing for us to allow all autists to develop as best they can without using “barbaric” intensive interventions upon them.

I am NOT advocating that nothing be done. I do not agree that ABA is inherently barbaric. It has had some barbaric proceedures in the past, but I think that even Lovaas does not advocate these today. Almost no one is using them. I think ABA is reasonable for many kids, though I think there are some dangers of overstimming a small no. of kids. I think it should be done in combo with sensory integration. I feel the language therapy should reasonably include picture exchange and/or sign language. So I am not really advocating it. (in fact I think I specifically said, “well you can’t really do nothing and see”). BUT though I don’t think there are too many good options, ABA has been compared wtih doing nothing but not really well with other valid techniques.

All I said is that some autists may not have really benefitted quite to the degree— and some may have been higher functioning. How do you explain the kids that did NOT make the great gains, do you blame the parents? I read the post of a parent that for years and years blamed himself for only doing ABA for 25 hours a week. Maybe he’d be normal if he did 40 hours, maybe 80? maybe 120? Maybe the parents sometimes gave in. The problem is is that if ABA is equally effective with all kids then you MUST conclude that the ABA is misapplied etc. I disagree with that assumption. I have worked a lot with adult autists in a day program and there was a huge range, from apparently quite retarded to those who pretty much could run the program. One of them made shopping lists, etc. Very few of the kids had had a lot of intervention, so why all this difference?

So I am not arguing to get rid of ABA or anything else that might look promising. Just that there are individual differences.

As for the Wild Child, I think there are interesting similariites. Though I doubt we could ever get it together to really say one way or another for sure. AS for institutional “autism”, I would NOT argue what Bruno Bettleheim has!!! I think that there may something in the brains of autistic children that simulates low stimulation, so they are self-stimulating to make up for it. Or something. But it might have made discrimination between real or not autistics difficult to figure out.
A child apparently coming out of the woods (apparently abandoned) would be a worthy subject. He would be the forbidden experiment in the eyes of French at that time, someone apparently unsullied by civilization. Who long he had been wandering is another question we wouldn’t know.

—des

Submitted by Anonymous on Sat, 02/19/2005 - 6:40 AM

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Dad, I want you to know the information and ideas you share are appreciated.

I have a 7 1/2 year old autistic son who went from being “severely disabled” to being very high functioning. Five years ago, he was the child on the playground who repeatedly poured sand over his head and would take off if he was approached. He didn’t answer to his name or call me “mommy” until he’d had almost a year of intervention. Even then, his communication remained minimal and echolalic. He didn’t play with toys but liked to line them up. And the melt downs were persistent.

He still struggles with forming new sentences sometimes. Confusion between words can still lead to misunderstandings. But most of the time he communicates just fine. Socially, he interacts when he wants to, on his terms. He’s now able to get his melt downs under control quickly most of the time. There are things we are still working on. But most people would look at him and think he was a typical kid, most of the time. He likes to play Yu-Gi-Oh, ski, swim, play with his big brother, wrestle with his father and he has a yellow belt in karate.

He has had 5 years of speech therapy, 20 hours a week of early intervention for 3 years, one year in a typical, mainstream kindergarten and one year in a small rural school (2 teachers and 16 children) with some support from a behaviorist. Unfortunately, the rural school situation will not continue to be available much longer and there is no other school that even comes close to being appropriate for him. But the good news is he has made so much progress that I feel grateful for the opportunity to homeschool him along with his big brother now.

I have always kept him moving, stimulated, engaged etc… as much as possible and I have had help along the way (with much fighting for services involved). But I know that other parents have done as much or more for their children than I have and there are children who have had many more services and hours of intervention than my son… and not all of them make so much progress. Autistic children are all as different from each other as LD children are from each other or as different as NT children are from each other. They all have different strengths and weaknesses. My son has compensation skills that the therapists and I can not take credit for. He was an early reader, he is brilliant with numbers, he is eager to please… we are just plain lucky.

I believe every possible variation of the human brain is out there. Some fall into the neat little catagories defined in the diagnositc manuals but many have a little of this and a little of that from the “buffet” of neurological characteristics available. All any of us parents can do is our best to figure out what works for our children.

Submitted by des on Sat, 02/19/2005 - 7:13 AM

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Yes, not with her specifically, but I have heard the argument before. As you see I don’t agree with it. I think the idea of not giving them early intervention (when it is available) would be like not providing blind kids with braille.

[quote=”Dad”]Not to drag this too far into the muck, but can I assume you have more than passing familiarity with the “Dawson” camp’s position?[/quote]

Hypermommy (and gosh I love your login :-)), your kid does indeed sound like he had initial things going for him (besides a supportive mom and gosh is that important)!

We just have to stand in awe sometimes I think. Even 3 years ago, I wouldn’t have thought my nephew would have a girl friend!!!

—des

Submitted by Janis on Sun, 02/20/2005 - 7:35 PM

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I knew a mom on a reading board one time who had two sons with LKS. I had never heard of it until then. The first child was diagnosed autistic. I think they discovered the LKS at around age 4. So they watched the second son carefully. In time, he developed the autistic characteristics as well. But they were able to begin medicating the seizures much earlier. Now, neither boy fits the spectrum. The mom has homeschooled and used good therapies for their learning issues. I unfortunately lost contact with her because she dropped off the list. But I think she was just one of the fortunate ones who ran across the right doctor at the right time. The seizures are invisible, so it was a miracle that she got the diagnosis.

Janis

Submitted by mmm214 on Mon, 02/21/2005 - 1:46 AM

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OK, I just read this on a sensory integration dysfunction listserve and decided it would be kind of interesting to post it. Just to add to the confusion :). I don’t know the author.

“Another interesting history tip:

A major cause of the Roman Empire’s decline, after six centuries of world
dominance was its replacement of stone aqueducts by lead pipes for the
transport and supply of drinking water. Roman engineers, the best in the
world, turned their fellow citizens into neurological cripples. Today our
own “best and brightest,” with the best intentions, achieve the same end
through childhood vaccination programs yielding the modern scourges of
hyperactivity, learning disabilities, autism, appetite disorders, and
impulsive violence. - Harris L. Coulter, PhD”

Submitted by victoria on Mon, 02/21/2005 - 2:01 AM

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The lead pipe and Roman Empire connection is a bit simplistic. Actually there was probably more lead contamination from lead oxide being used deliberately as a sweetener and in cosmetics, as well as totally unprotected mining, but that is yet another issue. Anyway the Roman Empire collapsed over centuries in a complex way, and lead poisoning is only one of hundreds of factors involved. But yes, there was lead poisoning, and I believe archaeologists can find traces in skeletal remains. It’s hard to trace the neurological connections with any degree of accuracy because the people that we have writtten records of are not the same people we have physical remains of.

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