Farewell to Pingu
I usually succeed in keeping to the science in this blog and refrain from sharing my other wider opinions. Today I slipped up.
Rather like James Simons, founder of the Simons Foundation, I do not have a high opinion of many supposed experts, particularly when it comes to autism.
Autism is often a backwater, where “academics” can still write the occasional quasi-scientific paper on some touchy-feely aspect that they consider important and make a name for themselves. On the back of this, they can advocate for their perception of autism and often encourage ever-wider diagnosis in people who are less and less severely affected.
So far this is fine; we are all entitled to have our own opinions, so no comments on Autism Speaks, Autism One, or the various National Autism Societies. They all have the best intentions.
I should highlight the Simons Foundation and the UC Davis MIND Institute as being excellent scientific sources of objective information.
The only reason for today’s post is the comment made by someone who might be seen as the United Kingdom’s top autism expert, Professor Simon Baron-Cohen, Director of Cambridge University's Autism Research Centre. With such a tittle, he should set a high standard.
"We're not looking for a cure … its part of their genetic and neurological make up," said Professor Simon Baron-Cohen, director of the Autism Research Centre at Cambridge University and vice-president of the National Autistic Society.
And …
“Children with Autism wait on average about three and a half years to get their diagnosis," Mr Baron-Cohen said.
It may come
as a surprise to the Professor, but Parkinson’s disease is also a complex
condition with a complex genetic element.
Numerous very bright researchers are working to defeat Parkinson’s disease and, I am informed, that they are quite likely to achieve this end.
Numerous very bright researchers are working to defeat Parkinson’s disease and, I am informed, that they are quite likely to achieve this end.
They set out
to find a cure; they may indeed fall short and just find an effective therapy.
Imagine
athletes starting a race, they all aim for gold. By aiming for first place you might just come
5th, but if you did not train for gold you would come last.
As for the
Professor’s comment that people in the UK wait over three years for an autism
diagnosis, this is not strictly true and is scaremongering. People with what used to be autism, i.e.
classic autism, Kanner’s autism or autistic disorder go to the front of the
assessment queue and get diagnosed for free within a few months. Some parents keep going back for a second,
third, fourth, fifth opinion until they get the result they want; this takes
years.
There is of
course nothing to stop someone in the UK paying themselves for the assessment
and so waiting a matter of weeks; after all they would happily pay to have
someone fix their washing machine.
The UK
consultant neurodevelopmental pediatrician, who diagnosed my son, told us at the time that a multidisciplinary
assessment is generally not needed and that she can see almost immediately if a
3-4 year old has autism. With what I now
know, I would have to agree with her 100%; to the trained eye it is obvious.
There are
numerous milder dysfunctions that can affect children and there is an ever
growing raft of observational diagnoses.
These diagnoses are all highly subjective and some really could be
simplified to “I DON’T KNOW” (PDD NOS = Pervasive
Developmental Disorder Not Otherwise Specified). I rather liked IED = Intermittent Explosive
Disorder.
In many cases the troubling symptom in these milder
dysfunctions is “just” anxiety. If the
anxiety is severe enough to need treatment, why not try one of the safe (i.e.
not Prozac) drugs? There are numerous existing treatments (Propranolol for
example) for children with anxiety and some interesting new
ones (Baclofen).
Then we would
be left with:-
Autism, a disabling developmental disorder diagnosed in early
childhood. Following its diagnoses,
based on simple observational/behavioral criteria, a biological diagnosis of
the underlying dysfunctions should be sought.
A small minority of these dysfunctions are substantially curable. Some dysfunctions in the majority of the
remaining children are, to a meaningful extent, treatable today.
Having treated what is treatable, use behavioral therapy.
Unable to
contribute to finding cures/therapies for the underlying biological
dysfunctions, the Professor and many like him have sought to widen the scope of
“autism” and diagnose ever more people. The latest idea being the Broad(er) Autism Phenotype (BAP), where you diagnose almost anyone as a teeny tiny bit autistic.
Now everyone from Nikola Tesla to Fieldmarshal Montgomery is supposed to have been autistic. Both did rather well for themselves for someone with a disability.
This “mild” autism is extremely subjective, which is why so many assessors will not diagnose it, and so yes, if you keep going for several years you may find someone to tell you that you have “autism”. But then what? There are no cures or therapies, apparently. There are these supposed “services” which are available on diagnosis, depending where you live.
Now everyone from Nikola Tesla to Fieldmarshal Montgomery is supposed to have been autistic. Both did rather well for themselves for someone with a disability.
This “mild” autism is extremely subjective, which is why so many assessors will not diagnose it, and so yes, if you keep going for several years you may find someone to tell you that you have “autism”. But then what? There are no cures or therapies, apparently. There are these supposed “services” which are available on diagnosis, depending where you live.
There are
indeed valuable services for people with severe autism, like speech therapy,
occupational therapy and behavioral therapy.
These are not going to help much with mild autism.
The mother
of the child in the above BBC interview said her child is much better now
because “he is on the right (anxiety) medication” and is in a school with small
classes. He had previously been given
all sorts of diagnoses, Tourette syndrome, OCD etc. in multiple earlier
assessments.
Why not take
an anxiety medication if you had OCD, or Tourette’s? Just google it. Was the doctor only willing to prescribe an
anxiety drug with an autism diagnosis?
The key was
treating the anxiety and being in a small class at school. Is that really “autism”?
Many
children who are different, in one way or the other, struggle in large classes
and many of them also get bullied, sometimes even by the teacher. By all means call it Asperger’s, but please
do not call it autism.
Yes, the
Professor would say that autism is a spectrum. This really means he has no clue what is the
underlying biological dysfunction, so let’s call it all “autism” and be done
with it. “Autism” is in fact just a name
for almost anything that goes mildly or severely wrong neurologically, in the
first few years of life.
Once you are
a teenager, if a new unknown dysfunction occurs, it gets new labels: -
schizophrenia, bipolar etc. These are
also just observational diagnoses and within them are numerous different
genetic and environment causes, some of which are treatable, if you care to
look.
Other Experts
It is not
just the Professor; you will come across numerous “local experts” perpetuating
misunderstandings regards autism. Like
the dedicated Principal of the autism special school explaining that some of
her kids have such terrible anxiety that their stomachs are tied in knots and
they have severe GI problems. Anxiety
certainly does not help, but we actually know much about reflux/GERD in autism
and the more serious IBS/IBD/ulcerative colitis. We even know the mechanism that may explain
why reflux/GERD is comorbid with autism, it is called mGluR5.
On the subject of ulcerative colitis and autism, just because a certain
Dr Wakefield highlighted this link, it is widely assumed to be a
falsehood. The literature is strewn with
links between ASD and ulcerative colitis.
I have an anecdote of my own. One
of the few people I hear about with Asperger’s, where we live, was first
diagnosed with ulcerative colitis, then followed the Asperger’s diagnosis, and
now he needs part of his intestines removed. This could have been treated years earlier
and then there would be no need for surgery now and years of trouble at school
could have been avoided.
Clever Scientists
What is
needed are hard-core clever scientists, not soft-hearted touchy feely
Psychologists. (Apologies to those forward looking Psychologists amongst you,
who keep updated by reading the literature)
I could not
agree more with James Simons and his Foundation, who choose to fund Nobel
Laureates and future Nobel Laureates.
Hopefully, they do actually aim to find cures. It may take a
hundred years, but along the way there will be numerous therapies to improve
outcomes in the meantime.
Some of
these therapies for specific causes of “autism” already exist. They are in the literature, but I guess Baron-Cohen
does not read it.
Perhaps a little shocking is that even though the
Professor is not a medical doctor and so has no medical experience of treating
people with autism, he was the 2012 Chair of the National
Institute for Health and Care Excellence (NICE)
Guideline Development Group for adults with autism. This is advice that is given to doctors in
the UK on how to treat autism. Not
surprisingly, NICE guidelines to doctors in the UK actually tell them not to
bother, core autism is not medically treatable.
In many areas of health, like asthma, the NICE treatment
guidelines are excellent and a great resource for clinicians and patients.
How can you attend the top universities, albeit not in
medicine, work 25 years in the field of
autism research, travel to all those nice conferences, even edit an autism journal and
not have realized/discovered that it is treatable? It is almost criminally
negligent. If cases of autism are
treatable, they are potentially preventable and, if caught early enough,
potentially reversible.
If
you want a warm feeling, don’t campaign for “Autism Awareness” or wider “Autism
Diagnosis”, campaign for free detailed metabolic testing, genetic testing and
MRIs (with MR spectroscopy) for all
people diagnosed under five with autism (at their first assessment!).
By the way,
I have no doubt that many of the highly intelligent researchers who get funding
from the Simons Foundation would also have struggled in their childhood had
they been in large classes, in non-selective, State-funded, primary schools.
A wake up call
It is not
just me claiming that most types of autism are, to varying degrees, treatable today.
There are a
growing number of readers of this blog who have found the same. Most are
regular parents, who current “Experts” would totally ignore, but some are
actually doctors, medical researchers, and even Professors of Medicine.
If an
amateur, with a blog, can figure out usable therapies from the literature, we
really do need some new Experts, and then NICE will need to rewrite their
guidelines.
