Monty aged 12 with ASD, “You have been transformed into an
Australopithecus afarensis, you walked upright more than 3 million years ago. Your
picture is attached. This morphing-station is a co-production between
Naturhistorisches Museum Vienna, Austria and the Smithsonian Natural History Museum in Washington”
We
can never know if they had autism 3 million years ago, but it certainly is not
a recent phenomenon. Today’s post,
prompted by a visit to Vienna, is a collection of historical episodes that I
thought I should include in this blog, before I forget them.
Austria,
as well as being home to an excellent natural history museum, where you can see
what your children might have looked like had they been born 3 million years
ago, is the home of autism.
Both Hans Asperger and Leo Kanner were
Austrian. Kanner was later educated in
Berlin and then, being Jewish, had the foresight to emigrate in 1924 to the US.
In 1930 he developed the first child
psychiatry service in an American pediatric
hospital at Johns Hopkins Hospital. He published his research on autism in
1943. His narrowly defined type of
autism became known as Kanner’s autism or classic autism; however if you read
his actual case histories below you will see that they include quite high
functioning people as well
Kanner clearly made a valuable contribution, but he also
had some odd ideas, like autism is just a childhood condition, so adults cannot
have autism and that autism is extremely rare. He thought that if a patient had epilepsy they
could not be autistic. He also famously suggested that autism was caused by refrigerator
mothers.
But unlike all the doctors who preceded him, at least he
wrote down his findings and sought out public attention.
Hans Asperger, presumably not Jewish, eventually became
chair of pediatrics at the University of Vienna. In 1943 he published, in German, his paper on
autism that focused on gifted children and what would become known as Asperger’s
syndrome.
The paper was finally rediscovered in 1991 and translated
into English by Uta Frith. Thereafter in
the English speaking world, people could finally be diagnosed with Asperger’s
Syndrome. Personally I think it is a
very useful/clear diagnosis: - no speech delay, no cognitive dysfunction, just
the trademark differences of mild autism.
It later became known that while he may have published
research on very high functioning people, he also had many patients who were
low functioning. The reason Asperger
highlighted the gifted children was that during World War 2, the Nazis had a
program called Aktion T4, which was set up to kill people with disabilities
(unable to work). People with Down syndrome,
epilepsy, mental retardation etc. were removed from their residential institutions
or homes and given a lethal injection or just carbon monoxide poisoning. The family later received a letter that the
child had sadly died of pneumonia.
At Schloss Hartheim, near Linz, two hours west on Vienna,
about 30,000 people were killed, including those selected under Aktion T4.
So not surprisingly, Asperger did not write about those
with autism without special gifts and talents.
Schloss
Hartheim
Great Ormond Street Hospital, London
1877
Twenty
years even before Johns Hopkins Hospital had been founded in Baltimore,
children with epilepsy, “autism” and GI problems were being treated in London
at Great Ormond Street Hospital, today of Europe's top children's hospitals.
They
were using a very early drug to shift the excitatory/inhibitory balance of the
neurotransmitter GABA. It was Potassium
Bromide, which is still used today in Germany to treat children with epilepsy. Of course back in 1877 they did not know why
it was effective. Below is a link to a
fascinating chapter of a book.
In
2015 this same hospital would tell you that autism is untreatable and that GI
problems are not comorbid with autism.
At
some point I will be writing a post all about Potassium Bromide and autism.
More History
For
those of you who despair sometimes about the low level of knowledge and
understanding regarding autism among healthcare providers and even supposed
“experts”, I suggest you look back at the history.
As
is often the case, history holds many of the answers.
Until
relatively recently most children with disorders like Downs Syndrome or classic
autism were sent from a very young age to live in so called “homes for the
feeble minded”. In recent times this occurs
far less common and nobody uses terms like feeble-minded, but nonetheless difficult to control children are still put “into
care”.
It
really was a case of out sight being out of mind.
As
we saw in the data on Down syndrome in the US, life expectancy was extremely
short in these massive institutions where the kids lived in dormitories. The average being only 10 years as recently
as 1970.
As
in Austria and Germany, in the US being sent to a home for the feeble minded
was very often a death sentence, albeit a slower one. The Germans even went as far as to
financially justify their actions by quoting the cost of keeping a child in an
institution for 10 years (the same life expectancy of Down's kids in the US,
just 50 years ago).
Given
this backdrop, not surprisingly everybody kept quiet about autism, almost
nobody was interested in treating it and nobody would dream of using the word
autism, for someone who was fully verbal and not mentally retarded.
So
it is hardly surprising that there are/were very few older people with autism, or
indeed Downs Syndrome.
Homes for the Feeble-Minded
There
were numerous Homes for the Feeble-Minded in the US and across the world. Here are some examples.
Maine School for the Feeble-Minded
Throughout its first 40 years, Belchertown operated
mostly without scrutiny from outside sources. Author Benjamin Ricci (whose son
lived at the school, and who later led a class-action lawsuit protesting the
conditions there) referred to the conditions as "horrific",
"medieval and "barbaric". Doctors at the school had little
regard for patients' mental capacity, evidenced by this quote:
His method of evaluating me consisted of looking me over
during the physical exam and deciding that since I couldn't talk and apparently
couldn't understand what he was saying, I must be an imbecile. [...] Since I
couldn't ask him to speak up or repeat what he said, he assumed I was a moron
The horrendous conditions at
Belchertown were revealed in 1971 in a newspaper article entitled "The
Tragedy of Belchertown". Parents sued the school, and when the
state Attorney General toured the facility, he described it as "a hell
hole".
In
Michigan they even gave a special mention to those with epilepsy:
Michigan
Home for the Feeble Minded and Epileptic
Why feeble minded?
Going
back 110 years in the United Kingdom, you can see where terms like feeble
minded came from:
In 1904 a Royal Commission was
appointed to consider “the existing methods of dealing with Idiots and Epileptics and with Imbeciles and Feeble-Minded not certified under the Lunacy Laws.”
They disallow the name of “Lunatic” and
“Asylum” and classify the mentally defective as follows:-
·
Persons
of unsound mind (who require care and control).
·
Persons
mentally infirm (who are incapable of managing their own affairs)
·
Idiots.
Defective in mind from birth.
·
Imbeciles.
(Capable of guarding themselves against common physical dangers, but incapable
of earning their own living).
·
Feeble-Minded.
(Persons who may be capable of earning their own living under favourable
conditions, but are incapable of competing with others or managing themselves).
·
Moral
Imbeciles. (Persons who display some Mental Defect with vicious or criminal
propensities on which punishment is no deterrent).
·
Epileptics.
·
Inebriates.
All of these three are considered Mentally Defective.
·
Deaf,
Dumb and Blind.
Almost
all such people were, in effect, locked up. In the UK at that time there were
149,628 such people deemed to be mentally defective. That is 0.4% of the population at that time.
Modern Times
In
rich western countries large “out of sight out of mind” institutions are a
thing of the past. They still exist in
some other countries.
Now that at least some children with disabilities are educated in the community, or
at least live at home many things began to change.
The incentive to hide your disability was
replaced by an incentive to promote it.
For each child with a diagnosis extra money is allocated to the school
district (in the US) and in many countries families are entitled to weekly or
monthly benefits payments.
Changes to diagnosis began to be made such that children with MR/ID were now diagnosed
as having autism, boosting prevalence.
Then from the 1990s onwards came the boom in diagnosing Asperger’s in children and then later diagnosing Asperger’s in quite old adults.
Finally, just to confuse everyone, in the US at least, Asperger’s has been
merged into autism.
Once
a rare condition, autism has become anything but; all over the period of 20
years. But it is not the same autism.
Even
though the science is clearly indicating that within autism are numerous
separate biological disorders and as many as 1,000 genes are involved, the US
psychiatrists, with DSM5, have decided that it is all just “autism” and you are
ranked on a scale of 1 to 3 for severity. I would have thought 1 to 300 might have been more reasonable.
The
key discriminating factors like regressive or not, MR/ID or not, epilepsy or
not, speech delay or not are not seen a relevant.
As
a result the modern diagnosis of “autism” then just begs the question “what
sort?”
Better
to forget about “autism awareness”; much better to explain what autism really
is and how certain types can be treated today based on existing hard science.
Dr Wakefield
Until Dr Wakefield published his paper in 1998, few people were familiar with autism,
because nobody spoke about it. Talk of
the MMR vaccine and autism created fear among parents.
In
the end Wakefield did a great deal of harm, even though much of what he said
was actually true. There is an unwritten
rule that must not be challenged, “vaccines do no harm”.
As
Martha Herbert pointed out, everything regarded as “Wakefield” became taboo,
and research in those areas became un-fundable. The link to GI problems is one area she
highlighted and is still disputed by many, but not Boston Children’s Hospital, supposedly
the number one Pediatric hospital in the world.
Hannah Poling
As
was shown in the legal case brought by US neurologist Dr Jon Poling, regarding
his daughter Hannah, children with mitochondrial dysfunction can suffer an
inflammatory response to multiple vaccines that can trigger mitochondrial
damage leading to profound autism. This
doctor meticulously documented his case and was awarded compensation of $1.5
million plus $500,000 a year thereafter.
It
turns out that in the last 25 years the US government has paid out $3 billion
dollars in compensation for childhood vaccinations (see table below).
It
was expected that this case would act as a precedent to later cases, opening
the flood gates so to speak. It did not.
In
this case Dr Poling was much more effective that Wakefield. He made his point and kept his medical
license.
But
the public health interest in vaccination programs is immense. Hundreds of millions of lives have been saved
by vaccines and nothing is going to be let to get in the way of that. Vaccines are effective once a critical mass
of people have taken them, (Herd Immunity).
So in theory it would be fine for certain groups not to be vaccinated,
like those with genetic mitochondrial dysfunctions.
As
Dr Poling pointed out, quite a large minority of people with autism do have
mitochondrial disorders; even Dr Kelley from Johns Hopkins has referred to
this.
Herd Immunity
When a critical proportion of the population becomes
immune, called the herd immunity threshold (HIT) or herd
immunity level (HIL), the disease may no longer persist in the
population
It
should be noted that in about 2% of people vaccination may fail to provide
immunity. In the case of influenza you
have to know which type of virus to protect against.
Here
is Dr Poling’s response to the highly sceptical Dr Steven Novella, an American clinical neurologist and assistant
professor at Yale University School of Medicine and a blogger. Novella is best
known for his involvement in the skeptical movement. He had written about the
Hannah Poling case on his blog.
Dear Dr.
Novella,
Your
assertion that the scientific question of Autism etiology belongs to the
medical community rather than Hollywood Stars is correct. I also agree
that Hollywood opinions are more likely to be broadcast to millions because of
their position in the media. This heightened awareness is nothing but a
positive thing for the million families struggling with this difficult, and all
too common, disorder. Jenny McCarthy is an Autism Mom looking for answers
and rattling some cages—good for her. Amanda Peet is a new mom who
believes in the importance of vaccines to protect her baby—good for her
too. Don’t attack the moms, listen to them.
These issues
are very complex as we exchanged before and not amenable to soundbites.
Regarding your entry on Hannah’s case, your blog entry unfortunately propagates
several of the mistakes from the media.
In
criticizing the journalism of Mr. David Kirby, you wrote:
“He refers
again to the Hannah Poling case, a girl with a mitochondrial disorder who
developed a neurodegenerative disorder with “features of autism” after getting
a fever from vaccines.”
Actually—Hannah has diagnoses of DSM-IV Autism (by JHU/KKI psychology) and mitochondrial disorder (by two metabolic experts). The only ‘degeneration’ that occurred (along with 6mos of total growth failure) after 18mos of NORMAL development followed vaccination and nothing else! Of course, any ‘scientist’ can obviously point out that temporal correlation in a single case never proves causation. Rule number one of pediatrics though is “LISTEN TO THE MOM.” Are 10s of thousands of autism moms over the last decade suffering from mass hysteria induced by Hollywood? Not likely.
Actually—Hannah has diagnoses of DSM-IV Autism (by JHU/KKI psychology) and mitochondrial disorder (by two metabolic experts). The only ‘degeneration’ that occurred (along with 6mos of total growth failure) after 18mos of NORMAL development followed vaccination and nothing else! Of course, any ‘scientist’ can obviously point out that temporal correlation in a single case never proves causation. Rule number one of pediatrics though is “LISTEN TO THE MOM.” Are 10s of thousands of autism moms over the last decade suffering from mass hysteria induced by Hollywood? Not likely.
You also
noted:
“This special case - which is not a case of autism being caused by toxins in vaccines - says nothing about the broader vaccine-autism debate.”
The only thing unique about my little girl’s case is the level of medical documentation—5 to 20% of patients with ASDs have mitochondrial dysfunction. Many other cases where mitochondrial testing is WNL is because "we never looked" not because the testing would be "within normal limits." Most mitochondrial experts will tell you that the dots of autism and mitochondrial disorders are strongly connected.
“This special case - which is not a case of autism being caused by toxins in vaccines - says nothing about the broader vaccine-autism debate.”
The only thing unique about my little girl’s case is the level of medical documentation—5 to 20% of patients with ASDs have mitochondrial dysfunction. Many other cases where mitochondrial testing is WNL is because "we never looked" not because the testing would be "within normal limits." Most mitochondrial experts will tell you that the dots of autism and mitochondrial disorders are strongly connected.
Finally, you
say:
“The case was settled (not judged in Poling’s favor, but settled) because both sides realized it was a special case that could not be extrapolated to other vaccine-autism cases.”
The case was not settled, it was conceded by medical representatives of Sec HHS. We are obviously pleased with the HHS decision to concede our case, but we had NOTHING to do with the concession. This was a unilateral decision from HHS (recall that HHS is the respondent, rather than the vaccine maker, as manufacturers have blanket liability protection afforded by the Vaccine Injury Program established in 1986) I will not speculate on the obvious question—why concede? Hannah’s case was positioned to set precedent as a test case in the Omnibus Autism Proceedings for potentially thousands of other cases.
“The case was settled (not judged in Poling’s favor, but settled) because both sides realized it was a special case that could not be extrapolated to other vaccine-autism cases.”
The case was not settled, it was conceded by medical representatives of Sec HHS. We are obviously pleased with the HHS decision to concede our case, but we had NOTHING to do with the concession. This was a unilateral decision from HHS (recall that HHS is the respondent, rather than the vaccine maker, as manufacturers have blanket liability protection afforded by the Vaccine Injury Program established in 1986) I will not speculate on the obvious question—why concede? Hannah’s case was positioned to set precedent as a test case in the Omnibus Autism Proceedings for potentially thousands of other cases.
With regard
to the science of Autism, I have no argument with the assertion that a single
case does not prove causation of a generalized autism-vaccine link. What
the case does illustrate though is a more subtle point that many physicians
cannot or do not want to comprehend (ostensibly because vaccines are too
important to even question). Autism is a heterogeneous disorder defined by behavioral criteria and
having multiple causes. Epidemiological studies which have not
found a link between autism and aspects of vaccination do not consider the
concept of autism subgroups. Indeed, in a heterogeneous disorder like
Autism, subgroups may indeed be ‘vaccine-injured’ but the effect is diluted out
in the larger population (improperly powered study due to inability to
calculate effect size with unknown susceptible subpopulation). I
think former NIH Director, Dr. Bernadine Healey explained it best in that population epidemiology studies
are not “granular” enough to rule-out a susceptible subgroup.
Furthermore,
‘science’ has not systematically studied the children who fell ill following
vaccination to determine what the cause(s) for their adverse reaction
was. It would follow that if you never tried to understand why a single
child developed encephalopathy following vaccination—you wouldn’t have the
first clue as to what aspects of vaccination you could alter which could
increase the relative risk of that adverse event (whether it be thimerosal,
live virus, or ‘too many’). Could
the susceptibility be a mitochondrial genetic haplogroup similar to
Chloramphenicol toxicity—sure it could! Why did a few Alzheimer’s
patients die of fatal encephalitis following administration of the failed
AN-1792 vaccine, but the majority had no ill effects (vaccine didn’t work
though)?
Definition:
Autism is a heterogeneous systemic disorder with primary neuropsychiatric
manifestations due to complex genetic and gene-environmental interactions
likely affecting synaptic plasticity early in childhood development. This
new theory of Autism is rapidly replacing the ‘old guard’ dictum that Autism is
a genetically predetermined developmental brain disorder of synaptic formation/pruning
that is set in motion prenatally. By the ‘10 year rule of science,’ your
time is about up!
Until the biological basis of ASD subgroups are
better understood, further epidemiological and genetic studies regarding
“Autism” causation will be relatively meaningless. We need good science to be able to
address these complex issues which parallel nicely the emerging story of
genetic and environmental influences in Parkinson’s disease. Perhaps some Parkinson’s
researchers want to take a crack at Autism?
Recommended
SCIENCE reading for the evening:
Altered calcium homeostasis in autism-spectrum disorders: evidence from biochemical and genetic studies of the mitochondrial aspartate/glutamate carrier AGC1. Mol Psychiatry 2008 Jul 8. (The discussion includes thimerosal as a potential toxin that could trigger further perturbations of calcium homeostasis leading to neuronal injury—and in a mainstream Nature publication no less)
Altered calcium homeostasis in autism-spectrum disorders: evidence from biochemical and genetic studies of the mitochondrial aspartate/glutamate carrier AGC1. Mol Psychiatry 2008 Jul 8. (The discussion includes thimerosal as a potential toxin that could trigger further perturbations of calcium homeostasis leading to neuronal injury—and in a mainstream Nature publication no less)
Thank-you
Dr. Novella and his band of skeptics for continuing the debate.
Dr. Jon
Poling
Jon S.
Poling MD PhD
Managing Partner, Athens Neurological Associates
Clinical Assistant Professor, Department of Neurology, Medical College of Georgia
Diplomate, American Association of Neuromuscular and Electrodiagnostic Medicine
ASN Certified in MRI and CT Neuroimaging
Managing Partner, Athens Neurological Associates
Clinical Assistant Professor, Department of Neurology, Medical College of Georgia
Diplomate, American Association of Neuromuscular and Electrodiagnostic Medicine
ASN Certified in MRI and CT Neuroimaging
In
the US there is $0.75 levy on childhood vaccines to fund a compensation scheme.
By
the 1980/90s almost all of the huge institutions for “feeble minded” children had
been closed in the US and other Western countries. The understanding of autism among medical
practitioners did not really change.
Finally Asperger’s old papers were translated from German into English
and in the 1990s large numbers of children started to get diagnosed with
Asperger’s syndrome. The stigma of such
a diagnosis was no longer as it would have been a few decades before.
Conclusion
It
is rather odd that many people’s points of reference regarding autism still
date back to those two Austrians, Kanner and Asperger, from 1943.
Neuroscience
has moved on a fair way since world war two, but in many ways autism has
not. In some ways it is now going
backwards.
The
main change is the surge of interest in Asperger’s, which is now, unhelpfully, being
referred to simply as autism. This does
a great disservice to those with what used to be known as autism. They generally
cannot speak up for themselves and really do need customized medical
treatment.
People
with Asperger’s are more than capable enough to decide for themselves whether they
want/need to treat their condition.
Fortunately
researchers probably pay little attention to what is (mis)reported in the mass
media regarding autism and the so those research papers will keep coming.
Drug
firms have been struggling for decades to come up with new treatments for
neurological disorders. Apparently the
disease likely to be first “overcome” is Parkinson’s. Dr Poling did suggest in his commentary above
that autism might benefit from some Parkinson’s researchers; maybe there will
be some surplus ones sometime soon.
It
is clear that no serious investigation of the type suggested by Dr Poling into
the effect of vaccines on specific sub-types of autism will happen. The link with mitochondrial disease and its
treatment remains almost hushed up, even though the clinicians involved are at
leading institutions (Johns Hopkins, Harvard etc.). As one reader commented to me, “why is Dr
Kelley’s work on mitochondrial disease and autism not published in the
literature?”.
In
reality, I expect that only a tiny percentage of autism can be traced back to
vaccines, so there should be nothing for public health authorities to be
fearful about. Even Dr Poling remains
pro-vaccines.
I
am still shocked that in the US over $3 billion has already been paid out in
compensation for damage caused by childhood vaccines.
