A real boy and real facts about autism
Sunday’s Observer featured one parent’s account of the joy and the difficulty that comes with raising a severely autistic child. “Our struggle to understand David’s secret autistic world” Christopher Stevens and his wife, Nicola have also written a book about their son, A Real Boy, which received this endorsement from NAS president, Jane Asher,
This wonderfully honest book tells us a great deal, not only about autism, but also about the extraordinary tolerance and unselfishness that is born out of unequivocal love. At the same time, it reveals some uncomfortable truths about the struggle it takes to access the rights of those with disabilities in our so-called civilized society.
Today I want to leave aside the family’s personal story in order to respond to Christopher Stevens’ argument that
- Prior to 1944 autism was virtually unknown.
- Autism was still very rare when he was born in 1964. But it has spread rapidly since then.
- The most rapid growth has been in those severely affected, like his son.
- Autism is so distinctive that it is unfeasible to suggest that it was somehow missed by everybody before Kanner. Kanner noticed something new.
- Autism is a twentieth century phenomenon that has grown to epidemic proportions in the 21st century.
HISTORY
Stevens seems unaware of a long history of autism that fills the void between Victor and Kanner when he writes:
Children like David were almost unheard of before Kanner. There’s one account, from Napoleonic France, of a boy found living wild in woods near Toulouse. Like our son, he treated people as tools. When he wanted to ride in a wheelbarrow, he would grab his doctor by the wrist, drag him across the garden, press his fingers around the handles and then climb into the barrow. And there’s a brilliant, beautiful report from 1869 by Mark Twain – he describes a piano recital in San Francisco by Blind Tom, an apparently autistic savant who could barely talk, yet who could imitate any sound, learn three melodies simultaneously and reproduce duets note for note at a single hearing.
Perhaps he is not aware of the paper by Shattock and Waltz who found evidence for autistic disorder in 19th century London based on “case histories from the notes of Dr. William Howship Dickinson at Great Ormond Street Hospital for Children.” Darrold Treffert has also paid tribute to Langdon Downs for identifying autistic children in 1887.
Autistic Disorder, while not named such until 1943, has existed for the same long time as other forms of developmental disorder and mental retardation. It is not a new disorder. In his writings in 1887 Dr. J. Langdon Down did not separate out autistic Disorder from mental retardation, but there was group of patients sufficiently different from his ‘congenital’ and ‘accidental’ forms of mental retardation that he felt compelled to set us a new category-’developmental’ — to describe a group of patients “impossible to include” in his two other categories of mental retardation. As he describes some of the traits and behaviors of some of these persons — “world of their own,” talking in the “third person,” being in a “dreamland,”"echolalia,”"self-contained and self-absorbed,” “automatic and rhythmical movements,” a countenance and “repose of brightness and intelligence,” lack of “physical features” of retardation, “no response in words,” and indeed elements of savant syndrome itself in this special group of persons — those point in the direction of what is now called autistic disorder as being the appropriate classification for some of these individuals whom Dr. Down had classified as mentally retarded.
Stevens also suggests that Kanner coined the term “autistic,” when he writes that:
The idea that one in 100 British children is affected by a mental disability that was almost unknown a generation ago is shocking and many people try to fend it off. ‘Isn’t this all down to better diagnosis?’ they suggest. If they could see my son, blind to danger and deaf to our pleas, they’d realise it wouldn’t take Sigmund Freud to spot there was something odd about this boy. Freud wouldn’t have said David was autistic, though – he was dead by the time the word was coined in the early 1940s.
In fact the term was coined by Eugen Bleuler, in 1910 when writing about Schizophrenic negativism.
“… schizophrenics who have no more contact with the outside world live in a world of their own. They have encased themselves with their desires and wishes [...]; they have cut themselves off as much as possible from any contact with the external world. This detachment from reality with the relative and absolute predominance of the inner life, we term autism,”
Bleuler was a contemporary of Freud. Together with Jung they had founded the journal Jahrbuch für psychoanalytische und psychopathologische Forschungen in 1908. Bleuler also gave us “schizophrenia” to describe the condition then known as dementia praecox. He did not believe it was a dementia. Nor did he believe that it was necessarily a disorder of childhood. The irony is that following Kanner’s discovery of “autism” the confusion about the relationship of autism to schizophrenia persisted at least until 1979 when the prestigious Journal of Autism and Childhood Schizophrenia changed its name to The Journal of Autism and Developmental Disorders.
I find it significant that Kanner, publishing in the USA in 1943, and Asperger, publishing in Austria in 1944, independently presented very similar case studies that described their subjects as autistic. Is this really because autism suddenly emerged from nowhere in the middle of the last century? Or was something else happening here?
We have the evidence that autism was identified in the 19th century by Langdon Down, who called it developmental mental retardation. Bleuler coined the term autism in 1910. (It is interesting to note that while Asperger acknowledged Bleuler in his writings Kanner never did, even though he must have been familiar with Bleuler’s work.)
Edit: This is not true. Thank you to Raj for this reference where Kanner does discuss Bleuler’s use of the word, “autism.”
Why the long wait until autism as a developmental disorder of childhood entered the literature?
The twentieth century was also remarkable for another phenomenon. Institutional care, or incarceration, depending on your reading of history, of people with mental health problems grew massively in the first half of the century and then went into an even more dramatic decline. In Unstrange Minds Grinker reports that
Most of these institutions were less than thirty years old, but by 1904, 2 in every thousand Americans lived in one. By mid-century, more than 500,000 Americans lived in mental institutions, more than 3 in every 1,000. [page 37]
Today there are only 2 in 10000 Americans occupying long term mental health care beds. It is not too fanciful to suggest that many of those Americans in the past probably had an autistic spectrum disorder. The UK experience mirrors that of the USA. In 1999, after a significant downsizing of long term hospitals in favour of care in the community, the NAS published research that showed a 2.4% prevalence of confirmed autistic spectrum disorder amongst inmates of secure psychiatric hospitals. The proportion was probably much higher in the past when institutional care was the norm.
Kanner stressed the professional status and educational attainments of the parents in his case studies. Asperger made similar observations. This is hardly surprising. Given the limited availability and the expense of social care at that time, only wealthy, educated people would be in a position to seek out an eminent child psychiatrist like Kanner rather than place their child in a state institution.
The remarkable thing is not that Kanner was seeing so many autistic children where none had existed before, but that he had the insight to grasp the common feature that united these apparently diverse individuals. Just as Down had viewed similar children through the paradigm of his time as developmentaly retarded, by the mid 1940s the time was right for an exceptional mind like Kanner’s to bring new insight to the questions these children raised.
EPIDEMIOLOGY
There are more difficulties when Stevens tackles the thorny issue of epidemiology.
Autism has spread so rapidly during my lifetime that many people are sceptical about the scale of the problem. In 1964, the year I was born, the Society for Autistic Children (now the National Autistic Society) issued an appeal through the Guardian : research suggested that there should be 5,000 people with autism in a British population of 50 million… and it could only find 2,000. Ten years later, it still hadn’t found the full 5,000.
This is a delightful story but it actually undermines Stevens’ argument. If it was so hard to find these very distinctive children 40 years ago are we supposed to believe that they did not exist; that there were actually less than one in 50,000 autistic children between 1964 and 1974? But never mind what research suggested in 1964. In 1966 Lotter carried out definitive research with the first ever epidemiological study of autism (in the English county of Middlesex). Using narrowly defined diagnostic criteria based on Kanner’s case studies, Lotter recorded a prevalence of 4.5 in 10,000. In my opinion, David Stevens would probably have met those criteria, based solely on Christopher Stevens written accounts of his son.
Lotter’s research showed that there should have been 22,500 people like David in 1964, not 5,000. And the NAS, who were probably best equipped to find autistic people, could not find a fraction of them, even after ten years of searching. I can believe that. Autism is not that obvious if you do not know what you are looking for. And it is easily misdiagnosed if you are looking for something else.
In Cumbria, where I teach, there were no known cases of autism in the entire county in 1983. Yet I can think of at least 5 children in the special school where I taught in 1983, who would have met the criteria if they had been tested. The NAS has a new campaign about autistic adults called I exist. It reports that in Cumbria the number of autistic adults known to the authorities increased by 60% between 2003 and 2006. It is reasonable to expect that a lot of these adults would have been undiagnosed children back in 1983.
Stevens goes on to argue:
Today, the society estimates there are 525,000 people with autism. American figures suggest that, among the autistic population, the proportion of severely affected people, such as my son, is four times higher than it was 20 years ago. In other words, autism is spreading like an epidemic and the worst cases are multiplying even faster.
It is important to remember that those 525,000 people are not all like David. They are not the children that Lotter was finding in 1966. In 1978 Lorna Wing, a psychiatrist who was also the mother of an autistic child and a founding member of the NAS, along with a psychologist called Judith Gould, (who, 20 years later, was to diagnose my 12 year old son with Aspergers Syndrome) went looking for Lotter’s 22,500. If we are to be strictly accurate they actually went looking for the proportion of those 22,500 in special education in Camberwell in Middlesex and found them all. But for every Kanner autistic child they found there were another 3 who were clearly autistic but did not fit the precise criteria devised by Lotter. These other children all had what Wing and Gould described as “the triad of impairments.”
When Wing and Gould published their research in 1979 autism was not even included in the diagnostic manuals of the time. Kanner’s autism was included in 1980 (DSM III). Wing’s autism (the triad of impairments) had to wait until 1987 (DSM III revised). In 1994 DSM IV finally included Aspergers Syndrome. Again, it was Wing who introduced this to the English speaking world.
CONCLUSION
- Autistics like David have been recognized since Kanner’s seminal paper in 1944. Acording to Lotter in 1966 they number between 4 and 5 in 10,000. They were clearly around in Victorian times when they were seen as a subset of the mentally retarded and not as a distinct diagnostic entity.
- In 1979 Wing and Gould confirmed Lotter’s finding and added another 16 in 10,000 who were clearly autistic but did not match the precise criteria used by Lotter.
- Subsequently Wing expanded the autistic spectrum by incorporating high functioning individuals of the Asperger type. Along with less specific diagnostic categories like atypical autism and pervasive developmental disorder - not otherwise specified (PDD-NOS) this added to the numbers by another 80 in 10,000 to give us the current 1% with an autistic spectrum disorder.
So Stevens is mistaken when he argues that:
Better diagnosis is simply a side-effect of the autism epidemic: we recognise it more easily now, because there’s so much more of it about.
The four fold increase in severe autism that happened in the UK thirty years ago (not the USA twenty years ago as Stevens stated) was the result of redefining our ideas about the nature of autism. It is not better diagnosis. It is different diagnosis.
I am aware that this blog post may seem a disproportionate response to another parent who was just expressing a personal opinion in the course of a newspaper article. But the Observer is widely regarded as a quality national newspaper in the UK. The last time they published a feaure on autism it had to be withdrawn on legal advice on account of the inaccuracies and misrepresentations it contained. Nevertheless the most pernicious of these inaccuracies - that leading UK researchers had found that there were now one in 58 children with autism - continues to circulate on the internet as a statement of fact. I offer this as an explanation and not an apology for my reasons for taking another autism dad to task in such detail. Christopher Stevens has written an insightful and honest account of raising David that deserves wide circulation. But his misleading ideas about the history and epidemiology of autism deserve to be challenged in equal measure.
Comment by Steve D | March 21st, 2008
Mike -
This is an outstanding summary, and I appreciate your clear presentation of the historical and epidemiological considerations.
Steve D
Comment by Ms. Clark | March 21st, 2008
Thank you for this well presented discussion of how autism has been viewed in the past. I think that people don’t realize how wrong their memories and interpretations of “how it used to be” can be.
Comment by isles | March 21st, 2008
It’s so easy for misinformation like Stevens’s to get published and so hard to erase it from people’s cache of “what they think they know.” Thanks for this erudite explanation of where Stevens errs.
Comment by Kathleen Seidel | March 21st, 2008
Excellent — lucid and methodical.
Comment by Joseph | March 21st, 2008
I think Lotter (1967) should be replicated today. That’s one of many things that can be done to settle the issue. Another is to go to a country with a very low prevalence of diagnosed ASD, and do a whole-population screening. (I think that’s what Grinker did in Korea).
It’s obvious, though, that when Lotter (1967) found a prevalence of 4.5 per 10,000, that was not the diagnosed prevalence by far. It’s sufficient to look at the pertinent birth cohorts in California DDS to confirm that. Autism has always been under-recognized, under any definition. It was under-recognized in the 1960s, even under a narrow definition. It is still under-recognized today.
Comment by laurentius-rex | March 21st, 2008
You could just as well argue that before the 1980’s there were virtually no physically disabled people.
Indeed I recall an occupational therapist of all people, who had been designated the task of advising the City’s planning department on access features, contending that there was little point in making too many access provisions such as electric doors in a major shopping development that was being planned at the time, as there were only ever likely to be a handful of wheelchair users who would benefit from them.
Well it is true that in my youth you did not see the number of wheelchair users on the streets, I only ever saw such people in the context of holding out collecting tins.
I associated disability in my childhood with the stereotypical notions of a wheelchair or a set of calipers and failed to see it in my own family history going back two generations to a grandfather who would rather remain indoors than bear the stigma of being seen outside in a wheelchair, or a great grandmother who could not get outside because of the steps to her front door. Today you see dozens of people with no less an impairment than my forebears gadding about on electric scooters.
I actually was responsible for designing a ground breaking piece of epidemiology in my home town, demonstrating by two randomised but extensive door to door surveys in different wards in the city, just how much disability there was when the official register at the time was being used as a serious statistic implying only a few thousand out of a population of a third of a million were registerable.
What was wrong of course was the register and the social forces that drove impairment out of sight and out of mind.
Comment by laurentius-rex | March 21st, 2008
Looking back to my dads generation, he was a child in the late twenties and early thirties of the last century, a time of economic depression, the last of a large family attended to by a shopkeeper who drunk away the profits of his meagre business, caring for a diabetic wife with not long to live.
He grew up to encounter the psychiatric system in the sixties and seventies, and was eventually diagnosed with a personality disorder, considering that to be better than the stigma of a “mental illness” he’d probably be diagnosed with AS today.
You cannot compare his early life to that of Kanner’s and Asperger’s patients.
There was no NHS when my dad was growing up, it’s little wonder that the ordinary people simply were not noticed.
Kanner and Asperger where only two people, there was no-one else even looking back then, let alone into the lives of ordinary people who could not afford access to a Dr even when they were dealing with severe and life threatening medical conditions.
What is lacking in a lot of modern commentators is a sense of proportion and a knowledge that the past is not a direct continuation of the present backwards, it really was a foreign country where they do things differently. Put simply what they lack is imagination.
Comment by RAJ | March 21st, 2008
The so-called ‘autism epidemic’ is a myth. It is neither increasing prevelance or better recognition and diagnosis.
I’ll base my argument on another, albeit smaller, so-called ‘autism epidemic’ that took place in the mid 1950’s to the early 1960’s. Leo Kanner in 1965 wrote a piece on the history of autism research since he published his landmark article in 1943. The review article was published in the journal Behavioral Sciences in 1965:
http://neurodiversity.com/library_kanner_1965.html
He noted that a multitude of autistic children began appearing everywhere and that the label ‘autism’ was becoming a fashionable lable that included children who may share some non-specific but isolated symptoms that are part features of the overall syndrome he defined, but isolated symptoms that are non specific to the syndrome he identified.
In the history of the conceptualiztion of autism as defined by various publications of DSM in the US, the criteria for making a diagnosis has vastly expanded and in 1994 with the introduction of DSM-IV, Kanner’s description was dropped and the current criteria no longer contains what Kanner called the ’sui generis’ of infantile autism ‘an indiffernce to the existence of other people, most notable in the toddler years and in parent child relations.
The new conceptualization invokes the vague and subjective ‘deficits in social interaction’ as the ’sui generis’ of infanile autism.
The validty of this concept has to be questioned when you have such diverse and unrelated conditions as mentally retarded Fragile X boys (whose social deficits are shyness and social anxiety not an indifference to the existence of other people). The new concept can confer an ASD diagnosis on many mentally retarded, learning disabled, ADHD, hearing impaired, vision impaired children. That institutionalized Romanion orphans adopted into well functioning English families and whose early institutionalization has been described as emotionally deprived, abused and neglected also meet ‘Gold Standard’ criteria for autism says more about the mislabelling of autism than it does about emotional deprivation being linked to autism.
The autism epidemic can be traced to DSM-I whih waspublihed in 1994 and which dropped Kanner’s defnition and replaced with the more subjectic concept.
As discussion of DSM-V becomes under scrutiny, it would be ise to heed Kanner’s admonishment to psychiatry that he and Van Krevelan objected to in 1965.
Comment by Mike | March 21st, 2008
Thank you for all the words of encouragement.
Joseph, I agree. It would be good to replicate Lotter’s study. Both Wing and Gould, who worked with Lotter are still around and would be able to advise on his methodology and criteria. He applied his criteria very strictly. I think he would have agreed with Raj (thanks for the correction Raj) that autism is a highly specified disorder.
Larry, thank you for the historical perspective. It reminds me of college days studying Piaget who erected a whole theory of child development on the basis of his observations of a small group of middle class European children (his own). We should never overlook selection bias or make the mistake of interpreting the past according to present day intellectual and cultural mores.
Comment by John Snyder | March 21st, 2008
Good work! This is an excellent review of an often poorly understood issue.
Here in the U.S. the general public (and many in the medical profession) have been led to believe we are in the grip of an autism epidemic of horrendous proportions. The news media reports this to be the case with incredible frequency, and the public has eaten it right up. In fact, nearly all of the parents I encounter (I am a pediatrician) have no idea that there is another angle to this story. Of course, most epidemiologists have concluded that the rise in the prevalence of autism is due to many of the points you and others above have made, and likely NOT to an actual increase in the percentage of children effected.
1. Changes in the way we make the diagnosis. The broadening of the diagnostic criteria - from autism, to PDD, to ASD - and the introduction of the term Asperger’s, has greatly enlarged the pool of those falling under the “autism” label. Children with a large array of conditions are now thrown into the mix as well, who were previously given other DSM diagnoses, or none at all.
2. The overall increase in awareness of and interest in children who fall “on the spectrum” by clinicians, the public, and those who provide services, including the school system.
3. The way the numbers have been counted in this country has also changed. The data was previously gathered in this country from the Department of Education. However, many children who are now considered to have autism were not enrolled in the regular school system, and were therefore never counted. These children are now included in the numbers.
Ironically, this great “autism epidemic” is a major weapon in the arsenal of the rapidly enlarging anti-vaccine crowd in the U.S.
Comment by Casdok | March 22nd, 2008
Great post.
Comment by Nicola Stevens | March 22nd, 2008
I am David Stevens Mum. David is the ‘boy’ in the book ‘A Real Boy”.
I found this blog quite agressive and really upsetting and I wish I hadn’t read it. We are after all entitled to our own opinion and you were rather nasty in your tone. We have had hundreds of letters of support from autistic families who have read the book and have identified closely with it - I get the impression that you have not read the book. You’ve hurt my feeling now.
Comment by RAJ | March 22nd, 2008
Towards DSM-V.
The following link lists the diagnostic criteria for ASD over many decades:
http://unstrange.com/dsm1.html
DSM-III (1980) lists six criteria.
DSM-III-R (1984) expanded the menu to 16 items of which 8 items would be met to qualify for a PDD diagnosis. Fred Volkmar conducted a field trial using DSM-III-R diagnostic criteria and reported that there were flaws in DSM-III-R that resulted in overdiagnosing autism. Volkmar was appointed to head the APA’s study group on autism and was charged with designing a set of diagnostic criteria that would resolve the problems with DSM-III-R. The result was the APA’s publication of DSM-IV in 1994.
What is remarkeable is that Volkmar’s diagnostic scheme actually had the opposite effect of what he was charged to accomplish.
DSM-III-R used Kanner’s definition.. “marked lack of awareness of the existence or fellings of others”. DSM-IV dropped Kanner’s definition entirely and replaced the definition with the ambigous ‘impairment in social reciprocity’.
DSM-IV lists the following:
“Delays or abnormal functioning in at least one of the following areas, with onset prior to age 3 years:
(1) Social interaction, (2) Language used in social communication, OR imaginive play”
Note that according to this criteria a diagnosis can be made for any child with a language disorder, neurological or psychological condition who also is very affectionate and sociable eg Kanner’s core defining feature is lost.
The rise of the so-called autism epidemic coincides directly with introduction of DSM-IV in 1994. With the removal of Kanner’s definition all of the items on the diagnostic menu for ‘autism’ can be described as Kanner stated, “isolated part features of the overall syndrome”. None of the items are specific to autism yet all are given equal weight.
The so-called Gold Standard diagnostic schemes (ADOS, ARI-R, etc) that are based on DSM-IV and ICD-10 criteria have the same methodologicaland and conceputual problems that was introduced with the publicaion o DSM-IV in 1994.
I see no interest by anyone in the research community to revisit the problem of defining what ‘autism’ actually is with respect to the APA’s autism study group that is charged ith designing new criteria to be included with the publication o DSM-V currently scheduled to be released in 2012.
Comment by laurentius-rex | March 22nd, 2008
The problem still is of defining autism from a social context, rather than actually knowing what it is.
The label preceded the explanations and therefore has led to the notion of a biologically distinct entity which may not be the case at all.
What has been behaviourally categorised according to the triad of impairments, might be (and probably is) a great deal more complex than appears with numerous and competing neurological substrates driving the observable behaviour, all arising from complex sets of genetic and physical interactions. By physical I mean that the rules that determine the way the brain assembles are not even chemical but to be understood you have to go beyond biochemistry to the very notions of what creates complex systems like the physical universe in the first place.
Autism needs a Stephen Hawking to sort it out, but for now it remains as elusive as schrodingers cat, neuroscience notwithstanding.
Comment by Mike | March 23rd, 2008
Dear Nicola
I am sorry if you are upset, but I was not criticizing your family or your book. Christopher made some misleading comments about the history and epidemiology of autism in the course of his article in the Observer. I responded to those comments and offered evidence to support my position.
I thought that I had made myself clear that I was not commenting on David or your personal response to his autism. I ended my post by recommending the book as “an insightful and honest account.” And I only recommend books that I have read.
One of my favourite books is Growing Up Severely Autistic, Kate Rankin’s account of raising her son Gabriel. The worst part of that book is when she leaves off from her memoir and writes a really bad chapter on the theory of autism. I told her so when we were together at a book signing in Glasgow and she replied that her book had won the NASEN award and mine hadn’t. There’s no answer to that
Comment by Linda | March 23rd, 2008
Fantastic post!
While it’s very sad that Nicola and her family have to deal with the difficulties of raising a child with Autism, her pain and hurt feelings don’t negate the facts of your very well stated argument.
The “Autism Epidemic” and the supposed connection with vaccination is simply ridiculous and easily disproven statistically, yet no amount of real evidence seems to deter parents of affected children from seeking some sort of explanation and ultimately, something to blame.
While I sympathize with the strong emotions and difficulties of seeing your child suffer, no one is helped by such dogged insistence on magical thinking.
My mother, who is in her 80’s taught developmentally disabled children for 35 years. 100’s of them would now be classified as Autistic. I am 37 years old and grew up in a town of 2500 people, and yet I went to elementary school with 4 children who would probably be diagnosed with Autism today, but who were simply dealt with then.
Comment by Ettina | March 27th, 2008
That’s not the same boy. The boy in ‘A Real Boy’ was a high functioning boy named Jonah, who was declared ‘cured’ of autism at 5 years old.
Comment by Ettina | March 27th, 2008
Also, so many people assume that ‘greater diagnosis of autism’ means that autistics being diagnosed today would have been considered normal in earlier times. Though that’s true of many, there’s also the autistics who were diagnosed with different things, or openly considered disabled but never diagnosed.
Childhood Schizophrenia used to be a very common diagnosis in the 1950s. I can’t find incidence rates (they weren’t much into that back then) but it was very commonly mentioned in books about childhood psychiatric disorders. It was rare among all childhood psychiatric problems, as autism is now among childhood developmental/behavior problems, but among the moderately to severely disabled kids it was quite common. Now, childhood schizophrenia is considered to affect 1 out of 10,000 children - quite rare, and a dramatic drop.
(Note: schizophrenia does not mean ’split personality’, it means ’split off from reality’ or ’split off from the world’. The stereotype of a ‘crazy’ person, for most people, is an adult schizophrenic. Nowadays only children with clear hallucinations and delusions can be diagnosed schizophrenic, and other delusional conditions must be ruled out. But in the 1950s, a withdrawn kid who acted strangely was likely to be considered schizophrenic, particularly if they had a period of normal development and were uncooperative with IQ tests or scored normal or better in some areas.)
Before the field of psychology really started, more severely autistic people were mostly just considered ‘fools’ or ‘idiots’. Sometimes they were called changelings. If you read changeling legends, except for obviously ’supernatural’ traits ascribed to them, the description is usually either a developmentally disabled child or a baby with failure to thrive. Among the developmentally disabled, a substantial proportion sound autistic - such as the child Martin Luther described who cried when touched, cried when people were happy and laughed when they were sad (happy people can be overloading, and many autistics laugh when upset).
Comment by Mike | March 30th, 2008
Ettina,
there are two Real Boys. You are referring to a child in America. David is British and the son of Nicola and Christopher, who wrote a book that is also called “A Real Boy.”
Comment by Sherry | April 17th, 2008
Hello, I am a mother of an 7 year old autistic little boy and I love that someone has taken time and wrote a book about the daily life of a family with autism.
Keep up and stop making people sad.
Comment by CrazyCaz | April 24th, 2008
I read with interest the above statemments
“There’s one account, from Napoleonic France, of a boy found living wild in woods near Toulouse. Like our son, he treated people as tools.
and
“a report from 1869 by Mark Twain – of Blind Tom, an apparently autistic savant who could barely talk”
Even my poor mathmatical skills can work out these are just two such reports. Surely if this type of autism had been around in history we would be reading a lot more reports like the boy in the woods or blind toms? To my mind if the name “Blind Tom” is a description it sounds as if Tom was also blind therefore indicating that Tom had other problems.
I also agree with the statement:
“Before the field of psychology really started, more severely autistic people were mostly just considered ‘fools’ or ‘idiots’. Sometimes they were called changelings. If you read changeling legends, except for obviously ’supernatural’ traits ascribed to them, the description is usually either a developmentally disabled child or a baby with failure to thrive.”
But these children were the exception rather than the rule, hence the term “village idiot” (singular) means just that “an idiot” not “idiot(s)” plural. So this STILL doesnt account for the amounts being diagnosed autistic today.
If these auties did exist in the numbers we are seeing today we would had seen whole hordes of wild kids and village idiots roaming the streets - Therefore even with my limited IQ its pretty easy to determine that the rise in numbers of children being diagnosed autistic today had risen dramatically. We would not have to search for these “hidden” hordes in our history they would have been glaringly obvious. So why is it happening to today? I think its abhorrent that people attack a mother and try to take issue with what after all is only her own personal experiences and the information she discovered whilst trying to understand her OWN CHILD. Doesnt anyone else see the obvious arrogance displayed when others lecture parents about their own experiences with their child. Even though they have never met the child in question!!!How on earth can the amounts of parents who all tell the same story all be so emotionally blinded and confused to repeat an almost exact set of circumstances and events in their children? Is this a result of them all taking the same halluceongenic pill? or can it be something which is being done to infants and children en masse?
Comment by CrazyCaz | April 24th, 2008
To RAJ,
I have been giving a lot of thought to the DSM-IV recently and agree with your statement especially on “the removal of Kanner’s definition all of the items on the diagnostic menu for ‘autism’ can be described as Kanner stated, “isolated part features of the overall syndrome”. None of the items are specific to autism yet all are given equal weight”.
I believe these changes are at the core of the problems we are are seeing today, the waters in the autism pool have been deliberately muddied and has caused a lot of confusion in society/parents/autistic community as to EXACTLY WHAT THE TERM “AUTISM” MEANS.
These days to me it seems autism is often linked to the immune system, which may put stress on the cell function of a child who has asymptomatic mitochondrial dysfunction. In an extreme case, the symptoms could involve regression with autistic like behaviours.
Because of very words “autistic spectrum disorder” autism means very different things to individauls depending on what they know about autism, their personal experience with autism and whether or not they have watched the films “Rainman” or “I am Sam”.
My experience is:
I have two children on the spectrum one HFA and one non verbal. They both suffered regression due to a routine medical procedure [avoids using the V word]. I witnessed this regression 3 times in my own children and in a best friends daughter. This regression was also accompanied by physical symptoms, fever, gut problems, dramatic change in temperment and loss of speech etc. I am sure you have heard this many times before.. so I wont continue on the V theme.
My non verbal son was given dx of autism following his dramatic regression so this regression and loss speech, the appearance of “asymptomatic mitochondrial dysfunction” sound famliar? This regression represented to me what “Autism” meant to me again my poor parental brain being so dysfunctional and emotionally unbalanced linked the regression and therefore the “Autism” with the dreaded “Vs”. This was how I viewed autism (note past tense “viewed”).
The long term prognosis and future (given to me by the “experts/medical community”) for my son was very depressing and gloomy (institutionalisation/severe learning difficulties) of course this affected my emotionally unbalanced parental mind even further and I viewed autism as an evil thing which had “stolen” my child. Because I would not believe that my childs brain just short-circuited like a faulty computer, (which is when you think about it would indicate a hardware problem or perhaps a virus infection?). I was informed that I was obviously unable to accept the autism in my children and I needed counselling and the doctor prescribed prozac for me. Therefore the medical community and social services seemed to be of the view that the problem lay with me not my child! - was this further proof of my unbalanced parental mind? Or was I asleep and having a vivid nightmare?
Have you ever had a nightmare where you are screaming at people trying to warn them/tell them something but they dont hear you and ignore you…like you dont exist … Welcome to the world of the “unbalanced parental mind” … Its fairly obvious that the problems my children had were because of my parenting and had nothing to do with their autism LMAOF. Let me just add here I was accused of having MSBP at one stage, because I constantly reported symptoms which pointed to immune problems in both my children. Eventually I was told it was all in my mind. If I were to continue annoying the busy health professionals with my childrens fictitous illnesses again this would cast doubts on my ability to parent my child it was considered “bad form” to use your children to get attention!! This really does make you start to question your own sanity especially when cleaning up the results of that “amazing imagination of mine” dirroeah/vomit and nursing my children through yet another ear infection/bout of tonsilutus. It really does get you to question just what is real and what isnt.
I wont bore anyone too much longer but you get the general idea of the circumstances in which I became aware of the Autism in my life. For years the regression I witnessed seemed to be “AUTISM” to me.
I just couldnt accept what was told to me by the experts I saw a lot of potential in my son he is very intelligent, he just couldnt communicate. So i turned to the autistic community to learn about autism and guess what!
I realised autism is in my family, its genetic!! In fact the autistic gene often gifts the individaul with high IQ and quirky personality (which describes my brother to a T). But my brother didnt regress in the second year of life. He never had problems with speaking. This was very different from what I had witessed in my children. My brother annoyingly stubborn and extremely clever and always insists on having the last word and talks at you not too you.
My experience of autism is:
1. High functioning clever (yet annoying brother).
2. Severely autistic non-verbal son who is very aware of me, and is very affectionate and loving. And very clever at problem solving especially when it comes to creating the problems! his ingenuity knows no bounds!
3. A high functioning daughter who presented with language delay regeression in skills at 12 months and 3.5 years. Her problems were blamed on my not talking to her enough and the fact I was a working mum. She stopped talking, had problems with balance (fell and hit her head twice in a week) and had to be toilet trained again and became very withdrawn and stopped giving eye contact - the playgroup she attended reported me to social services because those symptoms mirrored the symptoms of abuse! Incidentally has anyone here actually looked at the amount of autistic children taken into care? and parents accused of not coping and emotional abuse. Take a look at this can of worms its an eye opener also try looking at the closed family court system in the UK!
4. Two neices one like my daughter (who didnt speak until age 4 - not sure if she regressed but her mum always blamed her traumatic birth) and one who is Aspergers - (because she is very intelligent her mother says she doesnt have a problem, but she self harmed) but was long she was able to achieve academically her emotional problems could be ignored (she also had mutiple immune system problems when a young child and had extremely challenging behaviour many in our family often called her a “spoilt brat” - incidentally my daughter is also called “spoilt” LMAOF!
5. Me - just extremely confused - probably not helped my “emotionally unstable state of mind!
Here you have a family where there is clearly a genetic element and the environmental [V] factor has also played a part in the regression - now as confusing as this picture is painted, I suspect that this pattern would be repeated in many other families.
Back to the original point of this post is this question: What does autism really mean?
1. Character traits/quirky personality (chip off old block - hes just like his dad/uncle fred/aunty crazycaz) GENETIC; OR
2. Symptoms often defined by a set of (asymptomatic mitochondrial dysfunction) which In an extreme case involve regression with autistic like behaviours - therefore physical symptoms which can be treated and reversed? which would explain the apparent complete cures of a child diagnosed with autism?
I really hope someone can let me know one way or another. If indeed the DSMIV criteria includes all of the above, isnt it about time someone sorted it out, so that the children who are labelled autistic and known to have immune system problems can get the treatment they need. Because at the moment many of the problems my children have are fobbed off as part of their autism, therefore they are not treated as a neurotypical child would be. Now again is it just my skewed logic but does anyone else see a double standard being applied to autistic kids and the very real suffering they endure being ignored and dismissed as part of “autism”.
Or can it be that this confusion created by the DSMIV was deliberate and has been used to hide vaccine damage which is known about…I am sitting here with a tin foil hat on as I type this paragraph.
This is abhorrent and the whole of society should be ashamed of itself its ignoring these sick children and allowing them to suffer, and we call ourselves a nation of dog lovers? Animals seem to have more right to treatment than autistics.
I dont know if anyone else is aware but I have recently disocvered legislation that allows governemnts to experiment on the general population - this wording applies in USA now known as NAU (North American Union).
“PUBLIC LAW 95-79 [P.L. 95-79] TITLE 50, CHAPTER 32, SECTION 1520 “CHEMICAL AND BIOLOGICAL WARFARE PROGRAM” “The use of human subjects will be allowed for the testing of chemical and biological agents by the U.S. Department of Defense, accounting to Congressional committees with respect to the experiments and studies” “The Secretary of Defense [may] conduct tests and experiments involving the use of chemical and biological [warfare] agents on civilian populations [within the United States]”
whole populations used for bio weapons/drugs testing… a population of human guinea pigs?
I dont know if there is a similar statute that applies in the UK but I do know that govts can and do test drugs on populations.
Now if you were carrying out such testing/experimentation and it started to go wrong… wouldnt you try to hide it somehow? Are the person/persons who create the DSMIV the same people who manufacture vaccines?
I look forward to the responses on the issues I have raised.
Peace and Blessings and thanks for taking time to read
Comment by CrazyCaz | April 24th, 2008
Bingo!
A link to an article -I think the title needs no further explanation:
“Financial Ties between DSM-IV Panel Members and the Pharmaceutical Industry”
http://www.tufts.edu/~skrimsky/PDF/DSM%20COI.PDF
I think society needs to see a list of this panel who are currently compiling the the DSM-V along with conflicts of interests and ties to the Pharmaceutical Companies who after all manufacture vaccines.
Incidentally who funds APA?
Now surely they wouldnt try widen the diagnostic criteria to include many who would never have previously been labelled as autistic? After all wouldnt this confuse the public?
Its impossible that they could be so callous to include include children who have mulitple immune system problems which lead them to display autistic type behaviours - that could be treated and thereby allowing those children to suffer?
I mean we wouldnt treat animals like that would we? - that would be inhuman!
Incidentally its estimated that 1-6 children in NAU/USA have a PDD, I would love to know what that figure is in UK and also figures on just what percentage of the population now has chronic sometimes life threatening immunogenic problems such as asthma?
The earlier description of a nightmare is very relevant, am I the only one seeing this? Maybe I am crazy perhaps I am asleep, or maybe, just maybe, this nightmare is real!
Are others afraid to look at what I see because it leads them to question just what Autism really is.
Raj I would appreciate your opinion on this please. As I think the people who decide what is termed as autism need to be very carefully scrutinized. What is happening today is that society is losing faith in medicine especailly when discrepencies like this appear. I think by being open about exactly what is termed as Autism would greatly help end the confusion, especially for NT parents such as myself. I would welcome a chance to input on this new DSM-V.
I await your response
p.s. Autistic children like mine are a gift they are amazing, they dont judge, they dont condemn, they just accept. The gift they gave me was the ability to accept understand and love just for who they are, not for what society expects them to be … the humanity that I have witnessed from autistic adults far outweighs that shown by the Neurotypical Society that continually judges and tells them they are disabled - Society is more autistic in its ability to accept difference. Autistics dont seem to have that problem they just accept - just as they wish to be accepted for who and what they are Autistic - sigh (climbs off soapbox).
Comment by CrazyCaz | April 24th, 2008
the plot thickens are there any neutral autistic organsations who dont have connections with drugs companies.
Letter to Director, National Autistic Society UK
dated: 30.3.07
Dear NAS
I see that a drug company which makes MMR vaccine is one of your financial supporters (and has been since 2003). I understand that the company has, for example, paid for mailing to over 4,000 GP surgeries with information about autism.
I ask these questions as a medical author as well as a registered general practitioner.
Yours sincerely
Dr V Coleman
I wonder if anyone can shed any further light on this? Because it seems to make perfect sense why so many autistic advocates attack parents who say their child regressed after vaccines!!!