I have just spent a very pleasant weekend at the Maryport Blues Festival with my wife and my son, who has Asperger’s Syndrome. My daughter elected to go to Glastonbury instead. And a good time was had by all of us. There was even an autistic angle to our trip. Jools Holland, who was headlining the Sunday night concert in the main marquee at Maryport, has previously allowed the National Autistic Society to fundraise at his concerts and had compered a charity event for the Autism Research Centre: Autism, Art and Music in 2006. The DVD of this event was on sale alongside other marketing opportunities at the Sunday night concert. I decided to google it when I got home and opted instead for CDs by the excellent support band, The Sherman Robertson Band and Jules’ guest singer, Ruby Turner.
I am very happy with my choices, (correction; our choices, Sherman Robertson was my son’s purchase). But on returning home I was dismayed to find that the only link to the Autism, Art and Music DVD was broken. If any gentle reader knows where I can puchase this item I shall be forever grateful.
Meanwhile, back to the festival. It was fantastic. I was ready to be disappointed by Chuck Berry on the Friday night. At 81 years of age he ought to be well past his prime. Believe me, he is still prime. The guy was amazing. He finished his set by inviting members of the audience on stage to dance. His daughter Ingrid, who performed on stage with him made a special point of embracing a young dancer on walking sticks.
On Saturday we over-indulged, joining the Town Trail of lesser artistes performing in pubs and clubs around Maryport Harbour on a very hot afternoon before retiring to the main marquee for the evening concert. We may have been too tired to do Jimmie Vaughan justice, but he gave us his best from the main stage, ably abetted by Lou Ann Barton
And regarding those lesser artistes, on any normal weekend I would have felt privileged to be in their presence. I still feel privileged. But they were opals and pearls in the company of emeralds and diamonds. Ignoring my own preference for Guy Tortora and Sam Kelly we went in search of pastures new and discovered Starvin’ Sid from my home time of Grimsby and Little Stevie and the Business.
For some reason I cannot upload the video I took at the festival. When I work it out i will do my best to share it with you. Meanwhile you will just have to take my word for it that the musically diverse are just as rewarding as the neurodiverse.
July 29th, 2008
Posted by
Mike |
Autism, Uncategorized, recreation |
one comment
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.
March 21st, 2008
Posted by
Mike |
Autism, Autism epidemiology, National Autistic Society, Uncategorized, autism parents, journalism |
24 comments
A verdict has been reached in the trial of Karen McCarron. A jury has found her guilty of murdering her three year old daughter, Katie McCarron. She is going to prison for a very long time.
Katie was autistic. From the accounts that I have read she appears to have been a lively, happy child who was loved and accepted by all, all that is except her mother. In what must have been a terrible ordeal Katie’s grandmother told the court that,
Karen McCarron became very detached from the child in the months leading up to her May 13, 2006, death.
“She wouldn’t even call (Katie) by her name toward the end. She would just call her ‘the kid,’” she said.
Gale McCarron also told the jury Karen McCarron suggested institutionalizing the girl and said she would rather have a child with cancer than autism.
“Karen once said to me, ‘If Katie had cancer, I could deal with it. But I’ll never accept autism,’” Gale McCarron said.
That last statement is particularly poignant for me. I recently shared a week with my son visiting my mother in hospital. She has an inoperable cancer. He has autism. The two are not even remotely comparable.
Cancer is no respecter of persons. Even the most perfect can be brought down by it. The idea of a perfect daughter struck down by cancer was manageable for Karen McCarron. But the idea of a perfect daughter made imperfect by the actions of her mother was too much to bear. And Karen McCarron believed that she was guilty of causing Katie’s autism because she allowed Katie to receive her childhood vaccinations. She was influenced in her belief by David Ayoub, a part time radiologist who believes that
“the certainty of the science supporting mercury as a major cause of autism is probably more overpowering than the science behind any other disease process that I studied dating back to medical school.”
He also believes, based on his conversations with Karen McCarron, that,
“She was very dedicated to trying to get treatment for her daughter. I’ve met with a lot of parents who are dealing with autistic children, and she was one of the most loving mothers.”
Whenever I write about autism acceptance I get comments from parents who tell me that it is possible to separate your love for your child from your determination to fight their autism. But the message I get from Dr Ayoub’s remarks is that you measure love by your determination to fight their autism. Instead of separation we get a dangerous confluence.
Karen McCarron felt compelled to cure her daughter’s autism in order to assuage her own guilt. When the cures espoused by Dr Ayoub failed she sought to free Katie from her autism by killing her.
“Maybe I could fix her this way, and in heaven she would be complete,” she told police during the interview two days after Katherine “Katie” McCarron’s death.
Her inability to love and cherish and find joy in a child who did not meet her requirements for perfection speaks to a profound disorder within Karen McCarron. Her imagined guilt for causing her child’s autism is secondary to this. Her final, desperate act was an attempt to ease her own suffering, not her daughter’s. It was a selfish act. Her plea of insanity has been dismissed. She is guilty of murder in the first degree.
Let us all join in hoping that this decision brings closure to Katie’s family; father Paul, sister Emily and grandparents Mike and Gale. May they find the strength to master their grief at Katie’s death and anger at the manner of her passing. May they find peace and draw comfort from their memories of her joyful life.
January 18th, 2008
Posted by
Mike |
Uncategorized |
10 comments
Phil Schwarz post makes a really useful contribution to the discussion of my previous post about Problems Ahead.
I think that there needs to be more emphasis on the important distinction between *handicap* and *impairment*. That distinction allows us to examine — and mitigate — that part of disability that is socially constructed, via change in the society, while not losing count of the part of disability that is physical and intrinsic. On the contrary, keeping the distinction between handicap and impairment in mind allows us to better identify and mitigate impairment that is truly intrinsic and truly impairment, as such.
I recently watched a video of the recovered children on parade at the 2005 DAN! Conference in Long Beach. It was obvious to me from their manner and the way they talked to the host that some of these children were autistic. With the others it was impossible to tell. The parents were convinced that their children were “recovered” from autism. So were the audience. These children were better. But how much of it was the relief of extrinsic impairments?
My take on this is that these parents do not distinguish the extrinsic from the intrinsic. They see autism as an extrinsic thing - brought on by vaccines or allergies or some other environmental insult. They are not alert to the possibility that autism is intrinsic to their children and that the environmental events that impact on their children can be quite subtle. They are the sort of parents I had in mind when I wrote about ‘miracle cures’ in my book.
Children with Autism typically inhabit a world of chaos, our world. Their impaired ability to share in our common sense interpretation of experience leads them to impose their own uncommon sense of order and meaning. This can lead them to act in ways that are quite at odds with our ideas of appropriate behaviour. So we cajole, threaten, plead and generally respond in ways that add to their confusion and confirm them in their own version of reality. We seem quite mad and not to be trusted.
Then their Autism is recognized and we change. We follow more consistent programmes of behaviour management. We stop punishing them for non-compliance. We lose our sense of powerlessness and frustration. We think we know what is going on now and are calmer and more predictable. We may start them on a course of medication or a special diet or visit a therapist. We begin to lose our own guilt and anger and no longer project them subconsciously onto our offspring. And they improve. Surprise! Surprise! They may still be autistic but their autism is no longer so disabling and we are able to enjoy our children and teach them to enjoy us.
March 23rd, 2006
Posted by
Mike |
Uncategorized |
8 comments
