As a Brit, it really matters not one jot what I write to you, think of you or think of your policies. However, as we both know, it _does_ matter. Your soon-to-be-predecessor (and my goodness I am happy to write those words of Dubya) never understood why the opinion of the outside world mattered but you clearly do. And we in the outside world are rather keen on you.
I am very happy to note that your appointments indicated so far include Michael Strautmanis – father to an autistic child. As I understand it Mr Strautmanis very much favours an evidence based research approach to science. Good to know.
I was also amused to note that some think a certain Mr Kennedy may get an influential post. I suspect not. You don’t strike me a stupid man Mr Obama. Maybe some other portfolio needs filling? May I suggest Mr Kennedy becomes your drugs Cszar? I understand he has a good history in sniffing out drug issues.
Anyway, I was reading your Obama Statement in Support of World Autism Awareness Day and Awareness Month and I was both tut-tutting and nodding approvingly.
Tu-tutting as I read occasional talk of ‘epidemic’ and nodding approvingly as I read things like:
This effort will include diverse but credible research, treatment, personal care/assistance and family support…
and
Our nation and our world deserve an immediate and focused four-prong approach: research, intervention, life-long support, and an end to discrimination. As a result of the crisis, there is much debate as to the cause of autism and how to address it. What we need to do is devote ourselves to a solution built from a comprehensive plan that is research-based, inclusive, and effective.
Credible research….a plan that is research-based….very good to hear. I fear your recent competitor had no such plan but it is very good to hear of your commitment to a research-based plan.
Its also good to hear that you accept autism as a lifelong issue that requires intervention and an end to discrimination. Although this puts you at odds with the flat earthers who insist there is an autism epidemic which can be cured through non research based interventions (which obviously, they cannot back up) I think you have taken the right path and concentrated on the right issues – research based science that will offer a lifetime of evidence based interventions and care and result in an end to discrimination.
Glad you got in soon-to-be Mr President. I think you’ll do the real autism and autistic communities some real good.
Left Brain Right Brain 
very nice blog, i found you some how researching stuff on our sons birth defect esophageal atresia. i wish you the best.
Kev, you rock. You crack me up.
I’m glad Senator Obama “got in,” too. And I’m glad the rest of the world is glad. I can’t tell you how affected I’ve been by all the reports and images of people all around the world, rejoicing over the outcome of the U.S. presidential election. Can you believe that? It’s amazing. An Australian friend called me on Wednesday to congratulate me and my fellow citizens — “You did it!” — and I felt so proud, and so happy.
I’m optimistic. I trust that President-Elect Obama will be well-advised on this particular matter, and on the principles and the practicality of any decision he will need make. RFK Jr. has demonstrated that he does not have the capacity to give full and fair consideration to scientific evidence, or to adjust his understanding and opinions to account for new information; he does not appear to have the ability or temperament to run a complex bureaucracy; he is inflammatory, personally insulting people with whom he disagrees; and he is often flat-out wrong on matters of fact and science. The new administration would be shooting itself in the foot, credibility-wise, if RFK Jr. were to be appointed to any policymaking or enforcement role.
My son Jeremy (who’s 17, autistic, and attempts despite all frustration to reason about the behavior and emotions of nonautistic people) asked me, as we watched the TV coverage of Obama’s victory speech in Chicago Tuesday night, why tears were running down Rev. Jesse Jackson’s cheeks. So I explained to him how tears can be tears of joy, in someone overcome by emotion.
I also explained to him how far this country has come in my lifetime:
When I was 8 years old, in 1964, we drove from Michigan (where I grew up) to Florida (where my uncle had started a professorship at Florida Atlantic University — 15 years before IBM discovered Boca Raton). Stopping at gas stations and other public accommodations along the way in the deep South, the restrooms were in sets of 3: men, women, and colored. (In the North, it was more subtle: banks and realtors quietly refused to finance or sell homes in white neighborhoods to black families.)
There’s another measure of how far this country has come:
Grant Park on Chicago’s lakefront, where Obama spoke — quite a large space — was filled wall-to-wall with peaceful, happy people. This same space was where, 40 years prior, Mayor Richard Daley Sr. turned his cops loose on the people who had come to demonstrate against the Vietnam War during the 1968 Democratic Party convention, which was being held nearby. And now Daley’s son, the current mayor, was introducing the president-elect to this huge sea of happy peaceful people in that same space… That really blew me away.
If this country has the capacity to change for the better in those two huge dimensions, then surely it has the resiliency to come to terms with neurological diversity: to learn to separate the wheat from the chaff and provide the means for autistic and other neurologically-atypical people to maximize their potential, without attempting to eradicate difference that is not intrinsically disabling.
Funding should be removed from the child psychiatry community who are the behavioral genetic cranks who have dominated ‘autism’ for decades. Even Professor Sir Michael Rutter has described these ideologists as ‘genetic evangelists’. Autism is a medical condition, and funding should be redirected to medical science with the focus on prevention.
The only proven links to etiology are all environmental. For example, Rubella Autism, Fetal anti-convulsant syndrome, Fetal Alcohol Syndrome, Thalidomide embryopathy and Valproate Acid Syndrome are all accepted as high risk factors for autism and there is in place prevention strategies. Perhaps the most effective prevention strategies that medical science has implemented was the introduction of an effective rubella vaccine following the last rubella pandemic in the US in 1964, and the removal of Thalidomide from the marketplace as a treatment for morning sickness in pregnant women.
Why is the neurodiversity crowd always silent when it comes to prevention?
RAJ
Somewhere in the Autism Omnibus, Sr Michael Rutter made the very clear statement that neurological manifestations associated with autism from exposure to your list of :
“Rubella Autism, Fetal anti-convulsant syndrome, Fetal Alcohol Syndrome, Thalidomide embryopathy and Valproate Acid Syndrome”
should not be called autism. And that’s a salutory note. We have got to stop calling things like the above and things like mitochondrial encephalopathy autism. Kanner said as much forty years ago and it remains true.
Haven’t read much AutismVox have we RAJ? Kristina mentions prevention a lot.
Haven’t read much AutismVox have we RAJ? Kristina mentions prevention a lot.
Sorry for double post/blush
You’re kidding, right?
“You’re kidding, right?”
Hopefully, but it wouldn’t suprise me if RAJ wasn’t joking.
I’ve lost count of how many times the ‘ND crowd’ have been accused of not dealing with issues, when those exact issues are front and centre in the literature.
“should not be called autism. And that’s a salutory note. We have got to stop calling things like the above and things like mitochondrial encephalopathy autism. Kanner said as much forty years ago and it remains true”
http://www.ncbi.nlm.nih.gov/pubmed/9344050?
http://www.ncbi.nlm.nih.gov/pubmed/10882750?
http://www.ncbi.nlm.nih.gov/pubmed/16108456?
http://www.ncbi.nlm.nih.gov/pubmed/8157157?
In each study the diagnosis of autism was made by meeting diagnostic criteria for autism using Gold Standard diagnostic tools such as DSM-III, DSM-IV and ICD-10.
What in the world are you talking about?
“Somewhere in the Autism Omnibus, Sr Michael Rutter made the very clear statement that neurological manifestations associated with autism from exposure to your list of :
“Rubella Autism, Fetal anti-convulsant syndrome, Fetal Alcohol Syndrome, Thalidomide embryopathy and Valproate Acid Syndrome”
should not be called autism. And that’s a salutory note. We have got to stop calling things like the above and things like mitochondrial encephalopathy autism. Kanner said as much forty years ago and it remains true”.
Interesting that you say Professor Rutter shouldn’t be calling these associations with specific environmental insults ‘autism’. In all of these cases save Rubella Autism (there was diagnostic category for autism in the early 1970’s) is incompatible with Professor Rutter’s own career.
In each case, the diagnosis of autism was made using Gold Standard diagnostic tools (DSM-III-R, DSM-IV, ICD-10) that Professor Rutter himself was a co-author of as part of the working committee on diagnostic issues.
What then does that say about the Gold Standard diagnosis tool used to make a diagnoses of autism? If what you say is really what Professor stated, he is arguing against againt his own theories.
RAJ,
you are arguing multiple topics which are incorrect. People do discuss prevention.
The DSM and ICD are not “diagnosits tools”, “gold standard or otherwise” in as much as they do not describe how to make the diagosis. They are the diagnostic criteria. The tools, or instruments (ADOS, etc), are a separate item.
As to this comment
First, there will be (and has not been) a single “focus” for funding/research. Second, prevention as “the” focus would disenfranchise over 1 million Americans (not to mention the rest of the world, but I assume we are talking about the American research effort here). Not going to happen.
“The DSM and ICD are not “diagnosits tools”, “gold standard or otherwise” in as much as they do not describe how to make the diagosis. They are the diagnostic criteria. The tools, or instruments (ADOS, etc), are a separate item”.
We have argued this before. DSM-IV, ICD-10 as well as ADOS, ARI-R AUTI-R are all Gold Standard diagnostic tools which are universally accepted by clinicians and researchers ADOS, ARI- AUTI-R are also based on DSM-IV and ICD-10 diagnostic criteria. They absolutley describe exactly how to make a diagnosis:
http://www.unstrange.com/dsm1.html
You may have your own concept of how to define autism, then you need to explain Sullivans’ diagnostic criteria for autism.
BTW, what is the evidence that autism is a medical condition? Let’s see some evidence of a type that wouldn’t make left-handedness a medical condition. (Stating that it’s a medical condition because that’s obvious, or because autism is disabling, or because it’s defined as a medical condition, doesn’t count).
Now, I also take issue with the claim that autistic children with congenital rubella syndrome, fetal alcohol syndrome, etc., should not be considered autistic.
To extend the left-handedness analogy, should a left-handed child who is believed to be left-handed because of brain damage no longer be considered left-handed?
Here’s the problem. If we permit the notion that only idiopathic autism is actually autism, then every autistic person is one biological finding away from being plucked right out of the autistic population. That could be your kid or my kid or an autistic adult you know.
It makes no sense to me that being idiopathic is what makes the autism label valid. Furthermore, a biological finding in itself does not prove etiology, nor does a single risk factor explain autism in its entirety.
The diagnosis of autism, as with all diseases, is based on history, examination and investigation. ADOS etc; are simply involved in recording history/examination in a systemic way but still rely on history/examination. Unfortunately investigation of autism is in a confused state i.e.infrequent immunological measurements e.g. C.S.F.-T.N.F.-alpha confirming brain inflammation. Neuroscience has progressed since the 1970`s and rubella, alcohol, P.K.U., valproate and thalidomide all have similar effects on reduction in length and density of neuronal dendrites and can legitimately result in a history and examination confirming autism.
BTW, what is the evidence that autism is a medical condition?
LOL! LOL! LOL!
Among many, many other blindinlgy obvious findings of a medical nature, autism is characterized by decreased blood flow to the brain. If this does not qualify as a medical condition, nothing does.
– pD
I specifically warned that stating “but it’s obvious!” was not an answer. If you think it’s as simple as that, clearly you have not thought through it.
I mentioned handedness as an example. Brain blood flow happens to have a relationship with handedness. See Gur et al. (1982).
There are also gender differences in brain blood flow. See George et al. (2003) and Gur & Gur (1990). Is one of the genders a pathology?
Blood flow to the brain is reduced in Down Syndrome. Some people might think Down Syndrome is a medical condition, but it’s really a genetic mutation that is associated with various medical conditions.
Depression is associated with hypoperfusion. So you also need to ask yourself to what extent a change in cerebral blood flow is the result of emotional stress as opposed to intrinsic to the biology of the individual.
Finally, is reduced blood flow specific to autism? How good is the evidence of an association? Could the association be an artifact? That is, autistic children with reduced cerebral blood flow are more likely to be diagnosed, and hence more likely to be examined.
Joseph,
I loved the left handed analogy. Spot on. However, I disagree on the “plucked” aspect. The spectrum means just that. We should “pluck” the label from the differently abled.
Just as cancer is not one disease, ASD does not have one or even five causes and/or outcomes. The broad brush does not work well with a spectrum – you need lots of smaller brushes and paint colors.
I still fail to see how a gifted person with AS is any different than a professional athlete that can’t read or an actor that can’t handle simple math.
Joseph wrote:
“Here’s the problem. If we permit the notion that only idiopathic autism is actually autism, then every autistic person is one biological finding away from being plucked right out of the autistic population. That could be your kid or my kid or an autistic adult you know.”
Why should we take ‘idiopathic’ as the genuine autism. What Kanner saw was a particular kind of intelligent cognition and one that these congenital rubella/fetal alcohol/valproic acid exposed kids did not have. What they had was sufficient cognitive disability to fit any number of laundry list style diagnostics but always with a varied list of medical conditions as well, do note. Now today, if we put such kids through some of the perceptual tests that are producing such interesting results with autistic kids, what do you suppose we will find? I woukld really like to know how they stack up against the ‘idiopathic’ population – possibly no better than an NT wiring.
As far as I can see, this is yet another bit of negative fall out by insisitng on the medical model because that’s the only one that allows for litigation. At the same time it wrecks any chance we have of properly investigating autism. Not that that’s a problem for RAJ or this self styled ‘dr’ treg. They just want the money. Who cares what autism is just so long as there’s money to be got.
Many medical diseases have the pre-fix idiopathic after identifiable causes have been excluded. Autism is no different.
Why not try to develop a medical model for autism by co-ordinating investigations e.g. into immunological and cerebral blood flow abnormalities etc.
http://www.jleukbio.org/cgi/content/full/80/1/1#SEC10
http://content.karger.com/ProdukteDB/produkte.asp?Aktion=ShowAbstract&ArtikelNr=63570&Ausgabe=228465&ProduktNr=224082
The medical model may lead to useful therapeutic developments even though the underlying cause may not be identified. It does not appear to be a negative approach.
“Under the direction of Dr. Martha Herbert, assistant professor at Harvard University, the objective of ASA’s Treatment-Guided Research Initiative (TGRI), established in 2006, is to support a new generation of treatment-based research that will bring early and effective treatment to all people with autism. “We need both to help those who need it now, and to learn more about providing the most effective help,” states Dr. Herbert in her article Treatment-Guided Research: Helping People Now with Humility, Respect and Boldness (Autism Advocate, First Edition 2008). “Ideally, this should mean a marriage of research with treatment, with research improving treatments and treatment responses informing the direction of research.” From The Autism Society Of America.
The medical model of autism already exists, and no one is stopping it. It’s just a notoriously unsuccessful model so far, and who’s to say that it’s the appropriate model.
To me, it sounds like some people want to equate autism with Down’s Syndrome when, in fact, it is more like cancer. What I mean is that there is not one genetic underlying cause and environmental triggers.
While the observed symptoms or behaviors may have similarties; the underlying cause, impact, treatment and outcome may be very different.
NT is a spectrum. ASD is a spectrum. Life is a spectrum. Drawing lines seems rather foolish to me. Your score is 49 so you’re NT and your score is 50 so you’re ASD. And you, your score varies from 40 to 60 depending on the day so you swing both ways.
I have come to realize that many placed on the spectrum today were simply odd or unusual in the past. But we still thought they were “normal” because they functioned in society. Now, we want to label them. Is that really for the better?
I think acceptance starts by removing labels.