Just as the supposed connection between thiomersal and autism has been replaced by Green Our Vaccines sloganizing about all the toxins in vaccines, so the specific reference to autism has been diluted with reference to other neurologiciacal and psychological disorders. I often read that one in six US children has some sort of mental health or neurological problem and it is often blamed on toxins in vaccines and in the wider environment. The largest single group are those who are supposed to have ADHD, with 2.4 million children in the USA on medication it accounts for 5 per cent. Depression accounts for another 5 per cent; Obsessive Compulsive Disorder between 1 and 3 per cent; Autistic Spectrum 1 per cent. A more recent addition is Bipolar disorder which moved up the scale from 20,000 diagnoses in 1994 to 800,000 or 1 per cent of US Americans under 20 by 2003.
I am sure that there is a lot of double counting here. Nearly half of all children with bipolar have another diagnosis, usually ADHD. Lots of kids with autism have depression or OCD. Children with Tourettes often have ADHD or OCD. Nevertheless there are a lot of children being diagnosed wth various neurological and psychiatric disorders and for many the treatment of choice is some form of medication.
But for Mark Geier, David Kirby and Brad Handley the broader picture is clear. Never mind the 1 in 150 with autism. They are just the tip of an iceberg. We are looking at 50 million potentially brain damaged US Americans. Something has to be done.
I think that we in the neurodiversity movement have been rightly skeptical of these figures. We understand how the prevalence for autism has been driven up by broadening the criteria, developing better screening and diagnostic tools, increasing awareness and even improving provision. “Build it and they will come come.”
Although there are problems with the abuse of medications with autistic people the big problem for many in the medical profession and for parents has been that there is no autism pill. The search for a pharmacological solution has seduced some autism researchers and led to some famous dead-ends. Frustrated parents have turned instead to alternative practitioners offering the biomedical solutions that I have criticized from the inception of this blog.
Broadly speaking autism numbers have grown in line with our understanding of autism. We have moved from a narrowly defined disorder to a spectrum. We have struggled within that spectrum to strike a balance between the concept of discrete categories of disorder and the dimensional approach which suggests that some of the differences exhibited by autistic people may be welcome additions to the diversity of human wiring. Nevertheless, developments within autism research and the debates they generate tend to take us forward.
But I detect a different process at work with those other categories and dimensions of disorder and well-being. There may not be an autism pill but there is a pill for ADHD, for OCD, for depression etc. Sometimes there are competing pills and off label pills seeking a new niche and a sales opportunity. What if the same pharmaceutical interests that the biomedical autism community revile for there role in obfuscating the question of an autism epidemic in the face of an obvious crisis for the mental health of our children [1 in 6 ferchrissakes!] actually generated that broader crisis in order to boost drug sales?
Now, let me say that I fully support the idea of children as autonomous learners, active agents in their own development. We now recognize the inner life of the child and recognize that when things go wrong and children experience crises in their emotional and psychological development they are entitled to help and understanding. But 1 in 10 ten year old US American boys on medication for ADHD? Something is clearly wrong.
A recent report in the New York Times exposes a real conflict of interest and shows how easily scientists, convinced of their own correctness can seriously compromise, not only their own credibility, but that of colleagues working ethically in the same field.
It may just be a coincidence, but those leading the drive to diagnose and treat bipolar disorder in children are also the recipients of large and undisclosed stipends from the pharmaceutical companies that prescribe the drugs used to treat those children. The key word here is undisclosed.
Doctor Joseph Biederman,
A world-renowned Harvard child psychiatrist whose work has helped fuel an explosion in the use of powerful antipsychotic medicines in children earned at least $1.6 million in consulting fees from drug makers from 2000 to 2007 but for years did not report much of this income to university officials, according to information given Congressional investigators.
By failing to report income, the psychiatrist, Dr. Joseph Biederman, and a colleague in the psychiatry department at Harvard Medical School, Dr. Timothy E. Wilens, may have violated federal and university research rules designed to police potential conflicts of interest, according to Senator Charles E. Grassley, Republican of Iowa. Some of their research is financed by government grants.
Like Dr. Biederman, Dr. Wilens belatedly reported earning at least $1.6 million from 2000 to 2007, and another Harvard colleague, Dr. Thomas Spencer, reported earning at least $1 million after being pressed by Mr. Grassley’s investigators. But even these amended disclosures may understate the researchers’ outside income because some entries contradict payment information from drug makers, Mr. Grassley found.
It is important to remember that the failure to disclose these payments does not automatically negate the work these men have done in the field of bipolar disorder in childhood. But if their financial relationship to the pharmaceutical companies had been known in advance I am sure that their work would have been subject to much more rigorous scrutiny. I hope that it is subject to such scrutiny now and not summarily dismissed.
We in the autism community have seen what arrogance can do when a talented individual like Wakefield becomes so convinced of the correctness of his own position that he disregards the normal conventions of science in the hope that history will vindicate him. But personal conviction can lead to self delusion without the necessary corrective of an honest accounting to your peers. And when we are talking about six figure sums from “Big Pharma” honest accounting takes on a whole new meaning.
June 8th, 2008
Posted by
Mike |
ethics, mental health, psychiatry, science |
4 comments
The Green Our Vaccines Rally in Washington went off as expected. According to journalist and Vaccine author, Arthur Allen there were around 1500 in attendance. This news channel said there were hundreds but I watched the whole march go past on a traffic cam and estimated no more than 2000 so I will go with Arthur’s figure. Do the numbers matter? I think so. The autism-vaccine connection has been espoused for at least 10 years now. There are around 5000 cases in the Autism Omnibus Proceeedings. Over half of these were filed in a single year (2003) and since then numbers have dropped steadily.
| Fiscal Year |
Non-Autism |
Autism |
Total |
| FY 1988 |
24 |
0 |
24 |
|
FY 1989
|
1 |
0 |
1 |
| FY 1990 |
29 |
0 |
29 |
| FY 1991 |
118 |
0 |
118 |
| FY 1992 |
186 |
0 |
186 |
| FY 1993 |
137 |
0 |
137 |
| FY 1994 |
106 |
0 |
106 |
| FY 1995 |
179 |
0 |
179 |
|
FY 1996
|
84 |
0 |
84 |
|
FY 1997
|
103 |
0 |
103 |
|
FY 1998
|
116 |
0 |
116 |
|
FY 1999
|
405 |
1 |
406 |
|
FY 2000
|
161 |
0 |
161 |
|
FY 2001
|
196 |
18 |
214 |
|
FY 2002
|
189 |
768 |
957 |
|
FY 2003
|
153 |
2,436 |
2,589 |
|
FY 2004
|
126 |
1,088 |
1,214 |
| FY 2005 |
146 |
587 |
733 |
| FY 2006 |
154 |
169 |
323 |
| FY 2007 |
241 |
169 |
410 |
| Total |
2,931 |
5,393 |
8,324 |
Table of petitions filed is taken from The National Vaccine Injury Compensation Program Statistics Reports
This shows that there was a very brief flurry in which thousands of parents signed up to the view that their child’s autism was vaccine related followed by a sharp decline. I find this table interesting for two reasons.
First, if either the increasing burden of vaccines themselves or the increasing burden of ethyl mercury in the thiomersal containing vaccines (TCVs) was behind the increase in autism prevalence that was recorded throughout the 1990s it is not apparent in the number of petitions filed for compensation. Whatever the reason for the increase in prevalence parents at the time did not connect their child’s autism to vaccines.
Second, once the idea of an autism epidemic was mooted and vaccine damage was posited as a possible cause, lots of autism parents looked back and said, “Maybe.” And a significant few said, “Definitely,” and took action. Hence the bulge in the statistics for vaccine damage claims.
At the same time scientists carried out studies and found no connection between vaccines and autism. Consequently very few additional parents have jumped onto the vaccine-autism bandwagon. So we have a highly motivated group of parents, brought together by circumstances at a given moment in time, who now feel marginalized. They are convinced that they are right and equally convinced that they are victims of a conspiracy to deny them justice.
This is why the numbers are significant. A growing campaign, fuelled by new recruits would have attracted a far bigger crowd than the one seen in Washington this Wednesday. What we saw instead was a rump of increasingly embattled activists who sustain each other via a shared mythology. The more they are challenged the closer they cling together. They comfort themselves with the thought that science is on their side. But in reality they can only maintain their world view by their denial of science.
June 6th, 2008
Posted by
Mike |
Autism, Quackery, autism epidemic, parents, science |
3 comments
Conflict of Interest [COI] in scientific and medical research about autism is often misunderstood amongst members of the autism community and beyond. For a start there are many potential conflicts of interest. Most people think of financial COIs. If I am paid by a drug company will my research be biased in their favour? If I have patented a vaccine am I going to defend the entire vaccination programme? If I am being paid as an expert witness am I going to tailor my evidence to satisfy my paymasters?
But what if I am also a parent? Am I motivated by hope of financial security for my child to select research that supports my case in court? Do I have a deeper, psychological need to absolve myself of any guilt for my child’s condition? Bettleheim still casts a long shadow. Am I too emotionally involved to be objective? And then there are autistic individuals engaged in autism research like Michelle Dawson and Larry Arnold. Where does their COI lie? Do we sometimes use conflict of interest to mean that you conflict with my interest?
And, as Larry argued both in his blog and in the comments on my earlier post on COIs, there are conflicts that arise because we all are individuals with a personal and cultual history and that history helps to shape the assumptions we bring to any subject.
The New McCarthyism?
Here is an extract from Richard Horton’s book, MMR Science and Fiction in which he cites Ken Rothman:
Rothman not only questioned the importance of conflicts of interest, but also challenged the policy that many scientists and editors were then and now espousing - namely, disclosure as a measure to ameliorate the conflicts that will inevitably exist in all research.
Rothman claimed that the label of ‘conflict of interest’ was little more than a thinly disguised accusation of dishonesty. The idea that there was anyone in science - or in any walk of life, for that matter - who could obtain a position of pefect objectivity was obviously wrong. Everybody, in one way or another, approaches a subject with a prior point of view. By focusing solely on financial conflicts of interest, the self appointed guardians of science, (he means people like myself, the editors of journals) were undermining a long held principle that work should be judged only on its merits. ‘By emphasizing credentials,’ Rothman wrote, ‘these policies [of disclosure] foster an ad hominem aproach to evaluating science.’ [p70]
For some people, if you declare a COI you are automatically tainted and everything you have to say is deemed worthless. But that is silly. Anyone who declares a COI is not saying “I am not to be trusted.” Just the opposite in fact. You are being completely honest. Hiding a COI is more likely to make people question your honesty.
There was a study last year into the relationship between RhIg exposure in pregnant women and autism. According to a report in Medpage Today
The study was supported by a grant from Johnson and Johnson Company and ongoing autism research support from the Leda J. Sears Trust. Neither funding source was involved in the design and conduct of the study, collection, management, analysis or interpretation of the data, preparation, review, or approval of the manuscript. Author conflicts of interest were not listed.
Johnson and Johnson are heavily involved in the manufacture of products that use RhIg. A cynic might argue that even though J & J had no direct influence on this study, the authors could have been tempted by the hope of future funding to come up with a result that pleased their patron. I would argue the exact opposite. If everybody knows that J & J are funding your study and your results exonerate J & J’s product, you are going to make sure that everything stands up to scrutiny. It is only when you fail to list the connection that people get suspicious.
That is the whole point. So-called COIs are inevitable in modern science. There would be very little research done without financial backing from industry. And what is the point of paying for lies? People talk about “big pharma” as if it were a single entity. This entity is made up of competing corporations. Even if J & J could buy a piece of research that exonerated their product, how long would it be before a rival corporation found a scientist to expose the flaws?
This brings us back to Rothman’s argument that all science should be judged on its merits and not on the supposed merits of its authors. Most of us are not equipped to judge. Even within science the degree of specialization is so great that there may be very few scientists who can judge a piece of research on its merits. Professor Simon Baron-Cohen cites the case of Richard Borcherds in his book, The Essential Difference. Borcherds was awarded the Fields Medal
for his work on a topic so obscure that most mathematicians working in his former Cambridge University department are unable to understand what he is doing. His mathematical brilliance is unquestioned by fellow mathematicians even if they cannot follow the specifics of his ideas. [p155]
Hence the importance of peer review, another much misunderstood concept. Publication after peer review does not automatically confirm the truth or falsehood of a piece of research or a theory. It tells us that a piece of work conforms to acceptable standards of scientific research and is taken seriously by fellow scientists who may go on to confirm or refute its findings in further studies.
When Rothman wrote Conflict of Interest, the New McCarthyism in Science? he had no way of knowing that 15 years later the aptly named Jenny McCarthy would be shouting down a respected pediatrician on national television while her supporters attempted to trash his reputation in the blogosphere. This is becoming a hallmark of the autism/vaccine camp’s response when legitimate science challenges their beliefs. They automatically seek to discredit the researcher rather than engage with him or her in a discussion of the research.
Over on LB/RB Joseph has written about a recent manifestation of this worrying trend. Dr Paul Offit has become a hate figure because he speaks up in favour of vaccination and is a patent holder for the Rotateq vaccine that he helped to develop. Anti-vaccine groups assume that everything he says about vaccine safety is a lie because he is defending his own financial interest.
Again this is astounding in its silliness. Even if doctors were only in it for the money you make money from developing a safe vaccine. You lose money if your vaccine is unsafe. Even a hint of danger will get a vaccine pulled. Rotashield was a vaccine against the Rotavirus. It was very effective but may have led to an increase in the risk of intussusception. The risk was of the order of 1 or 2 cases per 10000. This was quickly picked up and the vaccine was withdrawn. Rotateq was developed by Dr Offit to replace it. It does not carry an increased risk of intussusception and both he and the Children’s Hospital of Philadelphia, where he is head of infectious diseases have benefitted from the royalties on this drug. Where is the harm in that? Anyone who reads Offit’s biography of Mauurice Hilleman, Vaccinated cannot fail to appreciate that both men’s commitment to vaccination is enirely honourable and motivated by a desire to alleviate human suffering.
Expert Witnesses
Dr. Fombonne’s actions have not historically been in the best interest of families with autism—he has declared himself an expert witness on behalf of various pharmaceutical companies in thimerosal-related litigation.
So says Safe Minds. There are two sides - parents and drug companies. Fombonne has made his choice and like Offit should be disqualified from further comment because of his “conflict of interest.” This is either an outstanding example of stupidity or it is rank duplicity. I suspect the latter. There is a world of difference between the experts who have a track record in their chosen discipline and are well qualified to offer expert testimony and those who make a career out of offering their services as expert witnesses without necessarily having the necessary level of expertise to be taken seriously. Mark Geier and Boyd Haley are a case in point. Fombonne and other experts like him are employed as expert witnesses because they already have a sound background in the relevant disciplines. They are not playing catch-up on the science in order to beef up their prospects of employment as expert witnesses.
From McCarthy to McScience
One of the chapters in Horton’s book is entitled The Dawn of McScience. He argues that COIs can have a negative impact. When big money tries to dictate the scientific agenda the result is often junk science. Horton cites the dispute between researcher Nancy Olivieri and drug company Apotex over the efficacy of deferiprone, a treatment for thalassaemia. Horton’s sympathies are clearly with the researcher. A more even handed view is presented by Julian Savulescu, Uehiro chair in practical ethics at Oxford University. Both seem to agree on the need for ethical oversight of the outcome of research, alongside the traditional ethical oversight of research proposals. The latter is designed to protect research subjects. The former would give a role to ethics committees in resolving disputes over the results of research, especially when those disputes pertain to patient welfare.
This could be made to work. It might overcome cynicism about big science and big money. It might even help to stem the tide of really junk science that is used to justify so much of the so-called complementary and alternative therapies out there.
In the meantime, if we are to call a halt to the McCarthyite use of COIs to bully and harrass scientific critics of the vaccine-autism connection, it seems only fair to me to hold its advocates to the exact same standards of honesty about potential COIs that they claim to uphold.
May 25th, 2008
Posted by
Mike |
Autism, ethics, science |
9 comments
CONSPIRACY
Remember the outrageous subpoena against Kathleen Seidel that was recently quashed? Clifford Shoemaker, the author of the subpoena was ordered to show cause,
“why he should not be sanctioned under Fed R Civ P 11 – see Fed R Civ P 45(a)(2)(B) which requires that a deposition subpoena be issued from the court in which the deposition is to occur and Fed R Civ P 45 (c)(1) commanding counsel to avoid burdensome subpoenas. A failure to appear will result in notification of Mr Shoemaker’s conduct to the Presiding Judge in the Eastern District of Virginia.”
His reply is basically that “a mere mother and housewife” could not possibly have written Neurodiversity.com on her own. She must have been prompted by malice and given material aid by the drug companies to pursue a campaign of intimidation against Clifford Shoemaker, his clients and his pet witness, Mark Geier. It is alleged that Kathleen is part of a conspiracy to protect the drug companies from the legitimate claims of parents of vaccine damaged children. As Kathleen says in her latest entry, Welcome to My Conspiracy
These documents offer a remarkable exposition of the grandiose, cartoonish conspiracy fantasies entertained by advocates of the concept of autism as toxicity and tort, and the arguments of those who seek to justify the perversion of legal processes in order to oppress their critics.
CONFLICT OF INTEREST
Imagine if a piece of research exonerating vaccines was put forward by a drug company employee whose husband was working for the defense team at the vaccine court. The parents who claim that their autistic children are vaccine damaged would quite rightly be appalled if such a potential conflict of interest was concealed. This weekend three pieces of research were presented at the International Meeting for Autism Research (IMFAR) in London. All were co-authored by Dr Hewitson, all seek to demonstrate a link between vaccines and autism and the science has already been severely critiqued by Orac.
But there is more. Over on LeftBrain/RightBrain Kev has revealed that Dr Hewitson has her own potential conflicts of interest.
- She and her husband have an autistic child and are pursuing a claim for vaccine injury.
- Her husband is employed by one of her co-authors, Andrew Wakefield at Thoughtful House.
- She is affiliated to Defeat Autism Now.
This does not necessarily invalidate her work. But one wonders why Dan Olmsted, who is singing her praises over on The Age of Autism, neglected to include these details in his piece. Did he know? Did IMFAR know when they accepted her presentations? Of course it could just be another part of Kathleen Seidel’s conspiracy against anti-vaccine campaigners.
THE BIGGER PICTURE
It is important to scrutinize the claims of DANites, anti-vaxxers and their friends in the media. But in the wider world of autism there are more serious questions to engage with that pertain to the mainstream research and medical communities who exercise so much more influence over the world of autism than those on the pseudo-scientific fringe.
Is it right to refer to autistic people and “healthy” controls in a scientific presentation? How far are we justified in questioning the assumptions and methodology behind a lot of autism research? Under what circumstances, if any, is the medical model capable of yielding useful results? Who is paying attention to the ethical dimensions surrounding informed consent from autistic research subjects?
Larry Arnold, an autistic person who is also an autism researcher and a member of the board of trustees of the National Autistic Society raises these and similar questions in his initial reflections on IMFAR. After the tiresome but necessary task, so ably done by Kev, Orac and Kathleen, of dealing with some of autism’s stinkers it is good to be able to turn to an autism thinker like Larry.
May 19th, 2008
Posted by
Mike |
Autism rights, ethics, science, vaccines |
16 comments
A QUESTION
Over on Orac’s blog, Respectful Insolence, The Integral asked an interesting question.
Orac, and anyone else, I need help…..I want to respond to someone who believes that autism is a “disease”………I don’t believe that at all. Are there medical blogs/entries/articles that offer “proof” (for lack of a better term) that autism is not a true disease, like HIV or syphillis or other things like that?
thanks………I wouldn’t know where to start looking.
The Integral
SOME ANSWERS
Well, the president elect of the American Acadamy of Pediatrics, Doctor David Tayloe has stated on the Larry King Show that he regards autism as a disease.
KING: He might do a few things. What puzzles you the most, Dr. Tayloe, about autism?
TAYLOE: Autism is a disease that just doesn’t have an easily identify cause or therapy.
KING: You call it disease?
TAYLOE: Yes.
Doctor Grinker in Unstrange Minds wrote:
“In the view of anthropologist Arthur Kleinman, a disease occurs when something is wrong with our bodily organs and systems, whereas an illness is the experience of unwanted or negative changes in our bodies or our ability to function in society. Autism is thus both a disease and an illness, and it cannot be otherwise.” [Unstrange Minds page 230]
Furthermore autism is included in the World Health Organization’s International Classification of Diseases. You will find it in Chapter V, Mental and Behavioural Disorders. Dig deeper and you find autism in block F80-F89 Disorders of Psychological Development.
In the United States (and increasingly throughout the rest of the world) The Diagnostic and Statistical Manual of the American Psychiatric Association (DSM-IV-TR) offers an alternative system of classification that, like the ICD 10, also refers to autism as a disorder.
This all illustrates the folly of using quote mining to try and prove a point. Dr Tayloe is a pediatrician. He treats sick children. I imagine that he uses words like illness and disease as synonyms and has no reason to consider the technical differences between these two terms that Dr Grinker, the anthropologist describes. And it is very unlikely that either of them will have enjoyed the dubious pleasure of sitting on commitees that explore the nosological niceties involved in classifying and defining conditions and deciding whether they constitute a disease or a disorder or even a syndrome. (Asperger’s Disorder in DSM-IV-TR is Asperger’s Syndrome in ICD-10 for example.)
Joseph responded to The Integral and linked to his own blog post on the Emporor’s New Pathology. I particularly enjoyed his conclusion.
Calling something a pathology shouldn’t be a big deal. Does it matter to Halle Berry, for example, whether her diabetes is called a disease or not?
The short answer is that it is problematic when the so-called disease refers to your way of being. If it were no big deal, then shouldn’t the gay community be OK with homosexuality being called a pathology? The reasons why it is a big deal should be self-evident: (1) It redirects efforts and resources into finding an often mythical “cure”, which many of the individuals with the condition do not want; (2) It discourages accomodation; (3) It provides a justification for discrimination; and (4) If the condition is an important part of someone’s way of being, calling the condition a disease is effectively the same as calling the individual a disease. This is the case whether we’re talking about a disability or a difference.
I would quibble with the last point. The individual may feel that. But this does not mean it is the intention of those who call autism a disease. I do agree with Joseph that:
It’s really not something there is a right answer for based on what is known. It’s probably more of a political question at the moment.
DISCUSSION
My old philosophy tutor warned us against ”weasel words” that often have to bear the weight of the user’s political and ideological baggage. That is why we have to be careful when ascribing significance to ”expert” opinions and definitions. When challenged over whether autism is a disease, a disorder, a syndrome or even a difference our natural inclination is to follow The Integral in seeking out an authoritative source to justify the political burden that we attach to the concept.
But that just mirrors our opponent, who has their own agenda and their own equally authoritative sources. We have all been there, swapping PubMed abstracts in a vain attempt to trump the other person’s argument. It is better to challenge the other person to justify their argument.
Some examples:
-
“What do you mean by disease?”
-
“What do you mean when you characterize autism as a disease?”
-
“By your definition is Down’s Syndrome a disease?”
In my experience the important thing in discussions like these is not to persuade the other person that they are wrong. Instead, if you believe that reason supports your case, the important thing is to persuade your opponent to think. It is also incumbent on you to think as well. We all come to these questions with a predisposition to favour one side or another. This may be a reasoned decision based on previous knowledge and understanding or it may be more visceral.
Some more examples:
-
If it is wrong to eat mercury in a tuna sandwich how can it be right to inject it into babies?
-
If autism is a disease of course we ought to try and cure it.
-
Investigating the causes of autism is the same as wanting to get rid of all autistics.
-
Saying I have a disease is like saying I am a disease.
Sometimes gut feelings turn out to be correct. After all instinct preceded intellect in the evolution of life. But feelings should not be privileged over other forms of knowledge. Your strength of feeling is no more a measure of truth than your opponent’s equal and opposite feeling on the same subject. We often turn to science to settle these questions. But, as Joseph observed, how we characterize autism is as much a political question or [my preference] a philosophical question.
The problem with philosophy is that it is not science. The scientist uses tested procedures, equipment, measuring devices to produce data. And there are further statistical tools to analyze the data and point to conclusions. It is not perfect. Bias can interfere with the choice of subject, study design and the interpretation of results. Even so the bench work of the humblest scientist should yield results that are more objective than the discourse of the most eminent philosopher. And most of us engaging in these discussions are trained in neither science nor philosophy!
A CONCLUSION
I think that whenever we use words like disease, cure, neurodiversity, acceptance around autism we should not be asking are they true. Instead we should ask if they are helpful. Do they take the discussion forward or do they erect barriers? It all depends on the context. In the case of anthropologists like Dr Grinker who are examining autism in the context of the cultural response to difference, it makes sense to think of autism as a disease entity and compare it to other disease entities. Are attitudes to autism within a given society concordant with attitudes to other diseases or to disease in general? Diseases like childhood cancers can attract sympathy and the local community will rally round an affected family. The same people may recoil from a child with AIDS. Where does autism fit in this scheme of things?
I do not think it is useful for medical doctors like Dr Tayloe to think of autism as a disease. All their training leads them to seek cures for diseases, to normalize the abnormal. But if you think of autism as a different way of being the solution changes. Instead of trying to normalize the autistic person you are more concerned to optimize their development. And if that means accepting the parameters of their autism rather than seeking to eradicate them so be it. When I addressed a conference of health service professionals in London a few years ago I gave them this message.
It is often the case that, rather than trying to normalize their behaviour, we would do better to teach autistic people that their normality is different to ours. Then, instead of telling them to change all the time because we are right and they are wrong, we could teach them strategies to understand us and make allowances for our behaviour.
A Positive Role for Health Professionals
I think this view of autism could be quite attractive to psychologists and psychiatrists working in the health service. Instead of seeking to pathologize the behaviour of autistic people they would be freed to celebrate the positive aspects of autism and share this with parents who naturally want to love and value their child despite their difficulties. There is a lot of discussion about the need to mourn the loss of your ‘normal’ child and your hopes and expectations for him while you adjust to having an ‘abnormal child’ after diagnosis. It may be that what we really mourn is the lost opportunity for celebration. Autism appears to have taken this away from us and from our child. As Matthew once said to me,
“I’m sorry, Dad. I wish I could have been the boy you never had.”
Take the autistic child. Restore his self esteem and teach him to take pride in himself. Educate his parents in the best ways to raise him and teach them coping strategies for the challenges he will present. Counsel the brothers and sisters and teach them how to draw strength rather than weakness from their autistic sibling. You may not have a cure. But there are ample opportunities for you to heal.
April 27th, 2008
Posted by
Mike |
Autism, Neurodiversity, autism acceptance, politics, science |
32 comments
Science Based Medicine is a new blog that promises to explore “issues and controversies in the relationship between science and medicine.” It has got off to a good start with posts about the false dichotomy between the beneficial effects of natural plant remedies and those nasty chemical based drugs, homeopathy, an excellent book review that discusses a recent book by R. Barker Bausell: Snake Oil Science: The Truth About Complementary and Alternative Medicine and, finally a discussion of yet another paper that debunks the mercury/autism hypothesis. Mercury in vaccines as a cause of autism and autism spectrum disorders (ASDs): A failed hypothesis
I heartily recommend it to you all. Family matters preclude me from writing substantial posts at the moment. But I will continue to recommend other blogs and autism resources to keep you going in the interim.
January 8th, 2008
Posted by
Mike |
Autism, Uncategorized, mercury, science |
no comments
W.M.W.J. van Oorsouw(a) M.L. Israel(b) R.E. von Heyn(b) and P.C. Duker(a)
(a)Pluryn Werkenrode Groep (Winckelsteegh) and Radboud University, Nijmegen, The Netherlands
(b)Judge Rotenberg Center, Canton, MA, USA
Received 20 August 2007; accepted 29 August 2007. Available online 22 October 2007.
Abstract
In this study, the side effects of contingent shock (CS) treatment were addressed with a group of nine individuals, who showed severe forms of self-injurious behavior (SIB) and aggressive behavior. Side effects were assigned to one of the following four behavior categories; (a) positive verbal and nonverbal utterances, (b) negative verbal and nonverbal utterances, (c) socially appropriate behaviors, and (d) time off work. When treatment was compared to baseline measures, results showed that with all behavior categories, individuals either significantly improved, or did not show any change. Negative side effects failed to be found in this study.
Research in Development Disabilities is a respectable journal with a well respected editor, Professor Johnny L. Matson. Professor Matson also edits Research in Autistic Spectrum Disorders. So I was surprised to see this abstract. I had assumed that Matthew Israel and the Judge Rotenberg Center were beyond the bounds of acceptable practise in psychiatry. Perhaps their reputation has not reached the Netherlands. Just to make sure I have emailed the lead author.
Dear Sir,
I am a special education teacher in the UK and the parent of an autistic son. I also campaign for rights and services for autistic people and maintain the blog Action for Autism <http://mikestanton.wordpress.com>I was surprised to read of the involvement of the Judge Rotenberg Center in your research, “The side effects of contingent shock treatment.” Are you aware that the JRC is the subject of considerable controversy because of its systematic use of electric shock? See for example this report by the New York State Education Department http://boston.com/news/daily/15/school_report.pdf and this open letter to the American Psychological Association http://canadiansovereignty.wordpress.com/2007/11/01/an-autism-and-mental-health-community-appeal/ Matthew Israel also has a strong financial interest in positive research outcomes for electric shock treatment in his role as proprietor of the JRC, all of which does not inspire confidence in him as an impartial research partner. Perhaps this explains why there were no negative side effects in your study, a truly remarkable outcome for any intervention.
But, surely Professor Matson is familiar with the controversy surrounding JRC? You would expect his journal to take a long hard look at a piece of research supporting electric shock treatment with Matthew Israel’s name on it before accepting it for publication. Yet the entire peer review process was completed in a just over a week. “Received 20 August 2007; accepted 29 August 2007″ I find that remarkable and disturbing.
November 15th, 2007
Posted by
Mike |
Judge Rotenberg Center, Quackery, psychiatry, science |
22 comments
Brains that go bump in the night.
Brain science has come a long way in the last 200 years. We look back at the early efforts of the phrenologists to map personality, behaviour and mental abilities onto specific organs of the brain with amusement. But that is only because their methodology was so woefully inadequate. These brain organs were supposed to affect the contours of the skull and a skilled phrenologist would take measurements of the skull and use his clinical judgement to interpret them in order to draw conclusions about a person’s character or mental capacities.
The early phrenologists relied upon post mortem studies of the brains and skulls of criminals and the insane. They were looking for things like the theft organ or the murder organ. Later the focus shifted to more generalized concepts, seeking organs for greed, jealousy, benevolence or self esteem.
Modern brain imaging techniques enable today’s neuroscientists to see the brain in action in living subjects. They have given us a detailed anatomical map of the brain and have been able to succesfully map particular functions to specific areas of the brain. Their results provide a more reliable guide to the workings of the human brain than the phrenologists ever could.
It is important to remember that, despite having access to so much more accurate data about the brain than the phrenologists ever had, we have not moved on that far in our ability to interpret the data. We are still ruled by the belief that specific parts of the brain are responsible for different types of behaviour. Sometimes this belief is well founded. Language areas, motor areas, the visual cortex; all have been reliably mapped.
Just as every sin contains the seed of its own salvation, so every virtue contains the seed of its own corruption. Success in mapping so many functions onto specific areas of the brain has reinforced the belief that the determinants of all human behaviour can be located within specified areas of the brain. This takes us back beyond phrenology to Descartes and the dichotomy between body and soul. Just like phrenology, the Cartesian dualism of body and soul is another idea that has persisted beyond its time. Only now it refers to the biological determinism of the brain ruling the body; rather than the spirit being superior to the body.
Descartes also knew a thing or two that appear to have eluded modern reductionists in science. He did not regard the brain as the arbiter of all human behaviour. Bodily passions could overrule the brain and lead us into irrational behaviour as well. This particular model of human behaviour as a struggle between higher mental function and lower animal instincts is no longer given scientific credence, though it persists in theology and some forms of Freudian psychiatry. But the principle that biofeedback mechanisms within ourselves as well as external pressures can act to modify behaviour is a necessary corrective to the belief that biological determinism begins and ends in our genes.
If we are a product of our brains, our brains are a product of our DNA. There is a multi-million dollar research programme to discover the genes that cause autism. Strictly speaking, the genes do not cause autism. Researchers are looking for mutations in the genes that code for the proteins that build the parts of the brain that control the behaviours that are supposed to be impaired in autistic people. But in the popular consciousness we have already had attempts to discover the Gay gene, the gene for aggression, etc. Media coverage of genes and autism will inevitably reinforce the popular belief that genes code for behaviour.
Autism Under the Gyruscope
Never mind. The scientists know what they are looking for, don’t they? Well sort of. At one time scientists believed they had identified a part of the brain that plays a crucial role in face recognition. Attending to and remembering faces is a problem for many autistics. It is also a problem for me. So I have been following this research with some interest.
In 2001 Karen Pierce et al. published a paper, Face processing occurs outside the fusiform `face area’ in autism: evidence from functional MRI, that showed that unlike non-autistic controls,
Overall results revealed either abnormally weak or no activation in FG [fusiform gyrus] in autistic patients, as well as significantly reduced activation in the inferior occipital gyrus, superior temporal sulcus and amygdala.
Again, quoting from the abstract,
Such a pattern of individual-specific, scattered activation seen in autistic patients in contrast to the highly consistent FG activation seen in normals, suggests that experiential factors do indeed play a role in the normal development of the FFA. [fusiform facial area]
The argument seems to be that autistic children spend less time looking at faces than normal children. So their FFA is impaired from under use. At the time this made perfect sense to me and encouraged me in my practise of teaching eye contact and facial recognition to my autistic pupils. But according to Pierce the autistic adults in her study where just as good at the task as the control group. The abnormality was in the brain areas they used to perform the task. These adults had obviously trained themselves in facial processing. So why hadn’t their FFA kicked in when they did take an interest in faces?
This suggests that autistic brains have impaired or different wiring. But it does not explain why. The picture was further complicated when Geraldine Dawson reported that children took time to develop their fusiform gyrus but it was normally fully functional by age 12. Perhaps there is a window of opportunity when the FFA can be activated but once this has passed other pathways have to be utilized.
She showed pictures of cars and faces to 11 autistic adolescents and adults and to 10 age matched controls. In all of them the temporal inferior gyrus reacted normally, activating in response to the cars. It also activated in response to the faces in the autistic subjects. There was one anomaly. Autistic subjects did use their fusiform gyrus when looking at pictures of their mothers. I wrote at the time,
This suggests to me that (contrary to the popular belief that autistic aloofness arises from the fact that their brains are differently wired) intense emotional experiences may help to shape brain function. ACs have brains that can work in exactly the same way as their NT counterparts. The fact that they do not respond to everybody in the same way just goes to show that their brains are just far more discriminating in the range of stimuli and experience that shape their response. As ever with autism, the actual mechanisms are far more subtle than we first imagined.
I had no idea what I was talking about! I see echoes of Victor and Dr Itard in those “intense emotional experiences.” there are also dubious echoes of holding therapy, a misguided and dangerous attempt to force an emotional bond with the mother where none was presumed to exist. The truth is I could not explain the anomaly and was rather clumsily using it to make the point that we are a long way from fully understanding autism.
Rectifying the Anomaly
The one good thing about science is that scientists love an anomaly. If something blows a hole in the current theory, a good scientist will find it interesting and follow it up. As it happens I was not too wide of the mark with my guess that,
their brains are just far more discriminating in the range of stimuli and experience that shape their response.
What if the fusiform gyrus is not an area for processing faces? What if everybody’s brains are more discriminating than we imagined? In this paper the fusiform gyrus and the inferior gyrus are both implicated in an expert object recognition pathway.
ABSTRACT
Brain imaging studies suggest that expert object recognition is a distinct visual skill, implemented by a dedicated anatomic pathway. Like all visual pathways, the expert recognition pathway begins with the early visual system (retina, LGN/SC, striate cortex). It is defined, however, by subsequent diffuse activation in the lateral occipital cortex (LOC), and sharp foci of activation in the fusiform gyrus and right inferior frontal gyrus. This pathway recognizes familiar objects from familiar viewpoints under familiar illumination. Significantly, it identifies objects at both the categorical and instance (subcategorical) levels, and these processes cannot be disassociated. This paper presents a four-stage functional model of the expert object recognition pathway, where each stage models one area of anatomic activation. It implements this model in an end-to-end computer vision system, and tests it on real images to provide feedback for the cognitive science and computer vision communities.
Expert object recognition? Perhaps the Fusiform Gyrus reacts to faces because most of us have an interest in faces and become quite expert at recognizing them. What if we became expert in something else. Would that light up the fusiform gyrus? Isabel Gauthier et al tested this by creating a set of novel objects called greebles and training volunteers to become greeble experts.
She concludes
The strongest interpretation suggested by our results together with previous work is that the face-selective area in the middle fusiform gyrus may be most appropriately described as a general substrate for subordinate-level discrimination that can be fine-tuned by experience with any object category.
One of Gauthier’s collaborators, Michael Tarr, has reported on similar research with extant experts and, just as with the Greebles, the fusiform gyrus is involved
Several of our findings speak directly to the question “Are faces special?” First, Greeble experts, but not Greeble novices, show behavioral effects – notably configural processing – that are often taken as markers for specialized face processing (Gauthier & Tarr, 1997; Gauthier et al., 1998). Second, Greeble experts, but not Greeble novices, show category-selectivity for Greebles in the right fusiform gyrus (Gauthier et al., 1999). Similarly, bird experts show category-selectivity for birds, but not cars, in the right fusiform, while car experts show category-selectivity for cars, but not birds (Gauthier et al., 2000). Reinforcing the generality of this result, chess experts, but not chess novices, likewise show category-selectivity in right fusiform for valid, but not invalid, chess game boards (Righi & Tarr, 2004). Third, across Greeble expertise training, subjects show a significant positive correlation between a behavioral measure of holistic processing (sensitivity to the presence of the correct parts for that object) and neural activity in the right fusiform (Gauthier & Tarr, 2002). Similarly, bird and car experts show a significant correlation between their relative expertise measured behaviorally (birds minus cars) and neural activity in the right fusiform (Gauthier et al., 2000). Behaviorally measured chess playing ability also shows a significant correlation with right fusiform response (Righi & Tarr, 2004). Fourth, the N170 potential (as measured by event-related potentials) shows face-like modulation in Greeble (Rossion et al., 2000), bird and dog experts (Tanaka & Curran, 2001), but only for a given expert’s domain of expertise.
So is the anomaly solved? Autistic children become experts on significant adults like mothers and thus arouse the fusiform gyrus when they see a picture of Mum. That still leaves open the question of why autistic children are not naturally interested in faces or social interaction to the same extent as their peers. Will the neuroscientists now go looking for the brain area that motivates us to become people experts? And when they find it how will they know it is the people area and not a different category of area that just motivates us to become experts?
It would be really nice if all those parents that yearn for some acknowledgement of affection from their autistic children could be shown an fMRI scan of their child’s fusiform gyrus lighting up when they walk in the room.
November 4th, 2007
Posted by
Mike |
Autism, genetic research, neuroscience, science |
14 comments
First, an apology.
My offline existence has led me to neglect Action For Autism recently. This at a time when my blog has never been more popular. But I have no illusions about the reason. It is all down to Jenny McCarthy. I wrote a couple of short pieces about her and Google did the rest. As a result many parents who are favourably inclined towards biomedical interventions for autism have boosted my stats. And many of them have left critical comments that merit a reply. But not all of these are attached to the Jenny McCarthy posts. So I am trying to deal with them all in one blog post.
When reading the comments I noticed a number of common themes. Liz summed up a lot of these themes in an insightful comment:
I agree that the DANs and their system is sorely lacking (understatement).
You say that a physician should act as a consultant to their patients and advise them on available options. That would be ideal, but very difficult to find such a person. In my experience, I haven’t found many physicians who actually do this. They barely get to know my child, don’t care to listen much to my concerns, and prescribe a one size fits all pharmaceutical drug for everything- not knowing to do anything else.
Unfortunately, there are lots of clowns out there practicing so called medicine. If conventional medicine had physicians who can do more than just Rx drugs, who knew about nutrition, who recognized signs of developmental delays, who analyzed each individual patient’s needs , were open to listen to parents, were competent, etc., perhaps so many parents wouldn’t be turning to alternative methods. Pharma has done some good, but lets not forget how much damage it’s also done. DAN has barely scratched the surface in catching up to the damage pharma has done.
Conventional medicine has no solutions and don’t seem to care to look for any. This is what makes parents go elsewhere.
The ironic thing here is that an actress (bimbo and not so famous), who doesn’t understand sponsored links, can use her mommy instincts and get her child to a place these PhD holders couldn’t!
(and so have many other unqualified parents)
What does that say for conventional medicine?
Shame on them!
There are four main ideas here.
-
Conventional doctors do not have any answers to autism beyond their prescription pad, which is not very effective.
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Consequently they claim that there are no answers to autism.
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Parents are not impressed by this and look elsewhere.
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They find their own answers and their children make progress.
These are very important points. When you get diagnosis for your child you do not immediately google “Autism” and look up your nearest DAN doctor. You ask your regular physician about what happens next and for many people the answer is not satisfactory.
Michael Fitzpatrick is a doctor and also the parent of an autistic child. In his book, MMR and Autism: what parents need to know, he quotes from the Oxford Handbook of Clinical Specialities, a popular reference with British junior doctors.
“Autism:
This neurodevelopmenal disoder is, if severe, the antithesis of all that defines mental health.
Prevalence: up to 90/10,000 of those <16yrs old - estimates vary considerably. Sex ratio M/F = 3.
[...]
Treatment: this is not effective. Behaviour therapy may be tried. A good teacher is more helpful than a good doctor.
70% remain severely handicapped. 50% will develop usful speech. 20% will develop seizures in adolescence. 15% will lead an independent life.
Apply for benefits (disability allowance if in UK).”
Fitzpatrick goes on to write,
“Its summary of medical wisdom on autism conveys with brutal economy the simple facts that doctors do not know what causes autism and have no treatment for it. Furthermore, the prognosis is grim: apply for benefits.”
Our knowledge and understanding has moved on in the 10 years since this edition of the Oxford Handbook was published. Though I doubt that this has had a major impact on the medical profession. Autism remains a rare condition when compared to childhood complaints like asthma and eczema. It is also rare in comparison to psychiatric disorders in children. So there is little imperative on doctors to update their knowledge when there are other more pressing claims upon their time.
NO HOPE or FALSE HOPE?
Still, I am surprised and disheartened by parents commenting that their doctor told them there was “no hope” for their child. Do doctors really say this to parents? Or do they say something like ”there is no cure but …” by which time the parent has stopped listening, their distress on hearing the diagnosis compounded by their despair on hearing that there is no cure? Their hopes are dashed in the doctor’s office and they go away believing that nothing can be done. Only later, when they come across websites that proclaim that autism is treatable, do they regain their hope and become converts to the cause of biomedical intervention.
CAUSE and EFFECT
Defeat Autism Now makes all sorts of claims about the causes of autism. But they cannot point to any well designed scientific studies that demonstrate causation. Instead they rely on patient testimonials, or more accurately, the parents of patients testimonials. “Recovered” or “recovering” kids are displayed at conferences and video evidence is posted on the web. This is not scientific proof. It is advertising. I am not saying these kids have not improved. I see kids improve all the time in the school where I work. I saw my own son improve. I am saying that, in the absence of properly controlled scientific studies, claims for particlar treatment protocols cannot be verified
Sometimes improvements are dramatic. Children seem indistinguishable from their peers, as well they might in a supportive environment where staff follow the advice of the Child and Adolescent Mental Health Services.
Psychological treatment programmes can help parents/carers in modifying children’s behaviour, enabling them to cope with specific difficulties and ensuring optimal schooling. Helpful advice to parents is that it is more effective to change the environment around the autistic child than to attempt to change the child.
This is helpful advice to schools as well. We do well to remember that autistic spectrum disorders are developmental disorders. These children are not frozen in time. They grow and develop, though not always in the ways we might expect. Creating an environment that plays to their strengths is likely to be more productive than constantly reminds them of their weaknesses. As I wrote elsewhere:
We all had a favourite subject at school that we were good at and something else we really struggled with. Imagine being told that you had to drop your best subject and have double lessons in your worst subject.That is not so far from the experience of lots of autistic children whose interests and talents are sidelined while we concentrate on their difficulties. This can send all the wrong messages to our kids. They learn about their limitations but rarely get the chance to achieve. So they put up barriers to protect what is left of their self esteem.
COMMONSENSE versus SCIENCE
There are still parents who will insist that they know the treatment worked. This happened with Secretin. Victoria Beck reported a dramatic improvement in her son’s autism after he was given Secretin to test pancreatic function. Secretin was enthusiastically espoused by DAN. The late Bernard Rimland claimed:
The use of secretin appears to be the most promising treatment yet discovered for the treatment of autism.
Rimland was so convinced that he and Beck secured the patent for using secretin to treat autism and sold it on for a reported $1 million USD to Repligen Corp. There was nothing wrong with this deal. They were paid in shares in Repligen which they made over to the Autism Research Institute. The CEO of Repligen had a double interest in Secretin. He was not just another businessman looking for a profit. He was also the parent of two autistic children. He wanted it to work and he was ready to pay handsomely to make it work. Unfortunately his company’s research, rigourously conducted to satisfy the US regulatory bodies, “failed to meet the study’s dual primary endpoints.” That has not stopped other, less scrupulous individals from continuing to promote secretin and even homeopathic secretin as a cure for autism.
Chelation is another remedy favoured by DAN practitioners. But autistic kids do not like taking strange medicines by mouth or being strapped down for a slow intravenous infusion. So some enterprising doctors have formulated skin creams containing chelators like Transdermal DMSA. There are glowing testimonials for TD DMSA on the web. But DMSA is water soluble and so it is extremely unlikely that it could ever pass through the skin. Think about it. Our skin is a barrier that acts to keeps the water in. Without it we would dehydrate and die. It also keeps the water out. We do not absorb water like a sponge when we bathe or shower. So how does the DMSA pass through our skin? It does not. And so there is no way for it to have any effect on our bodies at all.
When people think something works, where there is no scientific reason for it to work, we call it the placebo effect. That does not mean they were conned or are trying to con the rest of us. Placebo affect means people get better because they think they will get better. You can call it faith healing or the power of positive thinking. It is a real effect and one of the reasons why the gold standard of medical research is the double blind study in which a control group is given a placebo and nobody, neither the researchers nor the patients, knows which is which until after they have evaluated the results. The experimental group must not only show benefit, they must also show a significant benefit over and above the group on the placebo.
But how does this explain improvements in autistic children who are given placebos? They may be completely oblivious to what is going on. First there is an important effect noted by researchers into regressive autism, the distressing condition where children develop normally and then lose previously acquired skills or fail to progress thereafter. From a previous blog.
Much of the evidence for regression comes from parental reports. And it is not always clear whether they are reporting regression or failure to meet expected milestones. It is also necessary to exercise caution when dealing with parental evidence. Aitken knows this. It is in the same study by Taylor et al.
“ A review of each record showed that in 13 children the history given by the parents had changed after the extensive publicity about MMR vaccine and autism. Before the publicity the parents often reported concerns early in their child’s life, usually before their first birthday; the current history for the same children recorded symptoms as developing only after MMR vaccination, in some cases shortly after.”
(Taylor, Miller, Lingam, Andrews, Simmons & Stowe 2002. page 395)
We reinvent our memories in the light of experience. Memory is not a transcript of history. It is a constantly changing attempt to interpret that history with the benefit of hindsight. So parental accounts may not be the most reliable evidence without external corroboration.
Secondly, children are very sensitive to the emotional state of their parents or other primary caregivers. You can get a vicious circle where totally stressed out parents unwittingly add to their child’s stress. The child then freaks, adding to their parent’s stress, et cetera, et cetera. Then someone offers the parents a way forward. They feel empowered. They are less stressed. They approach their child with a more positive outlook. They are consistent in their dealings with their child. The child senses all this and benefits from the change in his parents. We have placebo by proxy. The parents think the therapy changed their child when, in fact, it was their belief in the therapy that changed them and then their child changed in response to the change in themselves. The therapy did not cause the change directly. It was the catalyst for change.
JENNY and I.
Most parents are not au fait with the scientific method or the history of autism. And why should they be? They have been thrust into a difficult situation and may not be enjoying the best of support from professional agencies. This makes them vulnerable. They are looking for a way out of this mess. They turn on the TV and see Jenny McCarthy spreading her message of hope. Who would not be sold in those cicumstances? Then Google brings them here and they read me bad mouthing Jenny. Outrage!
Listen up. McCarthy is only spread all over the media because she previously spread herself all over the pages of Playboy. Why should the opinions on autism of a young and buxom, B list celeb and wannabe film star be more credible than those of an overweight, middle-aged guy like myself? Last year McCarthy was an indigo mother with a crystal child. Her kid was the next stage in evolution. Then he became some kind of toxic disaster zone and now he is cured. Oh, and it was the vaccines what done it! This from a woman who had her son circumcised because she wanted him to have a “pretty penis.” Excuse my cynicism, please.
YOU and I
I have tried to address general criticisms of my position rather than go for a point by point rebuttal or engage in personal arguments. If anyone thinks that I have ducked their question or ignored their point of view, please feel free to repost it in the comments to this post and I promise to respond.
October 25th, 2007
Posted by
Mike |
DAN!, Quackery, autism parents, science, vaccines |
34 comments
Derrick Jeffries - Person with Asperger’s Syndrome and Nancy Weiss - Co-Director, The National Leadership Consortium on Developmental Disabilities, Center for Disabilities Studies, University of Delaware have issued
A Call for Ethical and Unprejudiced Leadership and Practice in the Field
which I was pleased to sign. The letter begins like this:
“This letter is to the American Psychological Association (hereafter referred to as APA), and to all professionals in the field of psychology. This letter calls upon APA and professionals who adhere to the APA Code of Ethics to act in a manner that is ethical and consistent with that Code of Ethics. Two recent APA documents are relevant to this call to action. They are, the 2006 “Resolution Against Torture and Other Cruel, Inhuman, and Degrading Treatment or punishment” (hereafter referred to as 2006 Resolution), and the 2007 “Reaffirmation of the American Psychological Association Position Against Torture and Other Cruel, Inhuman, or Degrading Treatment or Punishment and Its Application to Individuals Defined in the United States Code as “Enemy Combatants”" (hereafter referred to as 2007 Resolution). With fervor, we are advocating for people with autism, developmental differences, and mental health challenges; urgently entreating that they may be given the same respect with regard to human rights as alleged “Enemy Combatants,” or any other human beings. As professionals who adhere to the APA Code of Ethics, nothing less than an unprejudiced stance in this matter should be considered acceptable.
“Currently, children and young adults with autism, developmental differences, and mental health challenges are being treated in a manner that clearly meets the definition of Torture and Other Cruel, Inhuman, and Degrading Treatment or Punishment, as defined by the two previously mentioned APA documents. The Judge Rotenberg Educational Center (hereafter referred to as JRC) in Massachusetts has a long history of using electric shock, food deprivation and prolonged mechanical restraint, as well as other painful and dehumanizing aversive techniques.”
Please go to http://disabledsoapbox.blogspot.com/ to read the letter in full and add your support. Meanwhile, anyone interested in debating with Matthew Israel should visit the Justice, the independent student newspaper of Brandeis University. Nathan Robinson from Brandeis Students United Against The Judge Rotenberg Center has written an opinion piece about the JRC that has provoked responses from Israel and equally vigorous replies from Nathan and others.
October 14th, 2007
Posted by
Mike |
Autism rights, Judge Rotenberg Center, disability rights, science |
no comments