Action for Autism is moving. And it has its own name now.
I look forward to seeing you there.
Jenny versus Jennifer
How would you describe an actress and a mother who makes public statements about the nation’s vaccination programme?
That is a bit strong, even when applied to Jenny McCarthy. But this is the EOHarm email list passing judgement on a different actress, Jennifer Garner whose crime was to speak up in favour of vaccines, namely the flu vccination programme in the United States. Another letter described her as,
Just another Hollywood uninformed propagandist?
This without a hint of irony from members of a group that has nothing but praise for their own Hollywood uninformed propagandist, the aforementioned Jenny MCarthy! Another letter suggests that Jenny McCarthy might want to pop round to Jennifer Garner’s house for coffee and presumably put her right on the vaccine issue at the same time.
I feel she would get short shrift. Jennifer Garner will have been ably briefed by the American Lung Association. She knows that with an annual death toll of 36,000 from influenza and its complications, this is the number eight killer in the USA with 2.7% of all deaths. It used to be 4% which suggests that the vaccine is having a positive impact. EOHarm takes its inspiration from “Evidence of Harm,” a book that purports to be a balanced investigation of the alleged connection between the mercury content in childhood vaccines and the growth in the prevalence of autism, but ends up providing uncritical support for the belief that we are in the midst of an autism epidemic caused by mercury poisoning.
Original Biomedical Theory
Once upon a time biomedical explanations and interventions for autism revolved around diets, anti fungals and vitamin supplements. I have a book, “Biological treatments for autism and PDD” by William Shaw dated 1997 which even contains a recommendation for parents to vaccinate their children against Streptococcus Pneumoniae.
The closest it comes to implicating vaccines is the author’s belief that adverse reactions to vaccines may be one of the factors contributing to recurrent infections that require antibiotics. It is the antibiotics that are supposed to do the real damage, destroying the natural flora in the gut. Consequently fungal infections damage the gut and allow poorly digested peptides to enter the blood stream. If these get into the brain they attach to opioid receptors and cause the symptoms we diagnose as autism. Three years later Karen Seroussi wrote “Unraveling the Mystery of Autism and Pervasive Developmental Disorder” [Simon and Schuster 2000] which repeated Shaw’s basic hypothesis. Vaccines, typically MMR but also DPT, were again accorded a supporting role in exacerbating a pre-existing difficulty coping with infections. Mercury, heavy metal poisoning and chelation therapy did not get a mention.
There was a problem with this “Opioid Excess” theory of causation. [apart from the obvious one that even today it remains a tentative theory with little hard science to support it.] It had originally been expounded in 1979 [Panksepp J. A Neurochemical Theory of Autism] Even if the MMR was an added factor, it too had been around since the 1970s. But the dramatic increase in reported cases of autism in children suggested that something else was happening. There were perfectly good reasons not to believe in an epidemic. But for those parents already primed to blame MMR, the growth in autism led them to look for vaccine-related causes. During the 1990s the number of mandatory vaccines for children in the USA grew steadily alongside the autism figures. In some cases children could have received in excess of the stringent safety limits for mercury exposure if they had receieved all their vaccine shots. A paper pointing to supposed similarities between mercury poisoning and autism was published in a fringe journal. Information supporting the mercury hypothesis was widely disseminated amongst parents via the internet. David Kirby wrote his book, “Evidence of Harm” and the rest, as it were, is history.
Blame all Vaccines
Now that mercury has been removed from all mandatory childhood vaccines and autism shows no signs of decreasing you would think that people would move on and look for other explanantions for autism prevalence. Perhaps this article in Time Magazine or this interview with Dr Gernsbacher and Dr Neuschaffer could offer a less catastrophic interpretation of the figures.
But parents who have invested so much intellectual and emotional capital into their belief in vaccine damaged kids as a source of autism are increasingly blaming the vaccines themselves. The real vaccine/autism scare began with the MMR fiasco in the UK. That resonated in the USA where Dr Andrew Wakefield is a popular figure at Defeat Autism Now events. As I understand it, in one variation on a theme, the mercury in vaccines was supposed to weaken the immune system and the measles component of the MMR subsequently overwhelmed it. IF you believe this and IF you also buy into the conspiracy theory that the US government [in the form of the FDA and the CDC] and the big drug companies knew about this and are now engaged in a cover-up, it is a short step to believing that all vaccines are dangerous and everything that the government tells us about vaccine safety and efficacy is a lie.
For the true believers 36,000 preventable deaths from influenza [and that is in the USA alone, never mind the rest of the world] are as nothing compared to the hypothetical possibility that vaccines cause autism. Brainwashed Simpletons? No, more like sadly deluded.
The National Autistic Society website proudly proclaims that they are now hosting the Autism Education Trust.
The National Autistic Society is delighted to host the Autism Education Trust and welcomes the opportunity to work in partnership with colleagues across the sector. The trust will play an important role in sharing best practice, influencing decision makers, developing high quality support for early years and school staff and involving children with autism and their families in shaping provision.
So far so good.
The Autism Education Trust (AET) is a new organisation established with funding from the Department for Children, Schools and Families. It is dedicated to coordinating and improving education support for all children with autism in England.
About the AET
The aim of the Autism Education Trust is to create a platform for voluntary, independent and statutory providers to plan and develop appropriate autism education provision across all education settings, including early years.
This is excellent news. I went straight over to the Department for Children, Schools and Families to get some more information … and found no mention at all of the Autism Education Trust. So back to the NAS website to learn that the Department for Children, Schools and Families has only made an initial commitment to fund this for one year. It is actually an initiative of the The National Autistic Society, TreeHouse and The Council for Disabled Children.
The best estimates available to the UK government indicate that perhaps 1% of school children are on the autistic spectrum. Is it me or should the government be making a more long term commitment to financing this initiative?
Never mind, the money is there for now and full marks to the voluntary sector for taking the initiative and persuading the government to provide some backing. The question is, “How can we make the best use of this opportunity?” I suggest that people contact Judith Kerem, the project manager <email@example.com> if they have anything to offer to this project.
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.
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.
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.
The Independent today published a letter signed by leading members of Treating Autism, [TA] a UK charity which believes that autism is treatable using the biomedical methods championed by Defeat Autism Now! Their main complaint against the National Autistic Society’s Think Differently Campaign is that it paints too rosy a picture of autism, ignores the suffering of their children and refuses to acknowledge that autism is treatable using the aforementioned biomedical methods. Here is the letter in full, interspersed with my comments
We, parents of autistic children, wish to repudiate the National Autistic Society and its claim to speak for us and our autistic children. In particular, we demand the withdrawal of the latest leaflet (“Think Differently about Autism”) calling for public understanding of autism, complete with a website of supportive celebs.
Hope for people with autism does not lie in celebrity endorsement and a pretence that autism is normal but in the torrent of medical research pouring out of the United States. A model of autism as a genetic predisposition combined with precipitating environmental damages is being developed in the US, with new discoveries almost weekly. These developments offer real hope for those affected by autism.
The leaflet does not pretend that autistic people are normal. What is normal about the words on the front of the leaflet, “He gave you lovely hugs but then he’d bite you.” ? The autism model emerging in the United States is just a hypothesis. Nobody disputes the truism that autism results from a combination of genetic and environmental factors. But I am unaware of any “environmental damages” that have been reliably identified in the scientific literature.
What is the contribution of the NAS at this exciting time? The only contribution is a leaflet with pictures of people who “choose not to speak” and a plea for public understanding. The public should know that the NAS is riven with feuding between those who believe autism is “normal” and those who believe it is a disability which should be treated.
Actually the leaflet pictures one young adult who “prefers not to speak.” I am certain that the NAS would not have used those words without checking first with the young man in question and his family.
The NAS reflects the diversity of opinion that exists within the world of autism and we have some vigorous debates. But they are conducted with mutual respect by people who continue to work together for the greater good of all autistic people and their families. That is why the NAS has experienced 20 per cent growth this year. Not what you’d expect from an organization “riven with feuding.”
One of our number signed this letter en route to a conference run by the National Autistic Association of America whose speakers include a representative from the US-government National Institute of Health speaking on the part played by the environment in the autism epidemic. Only an ocean but a world away from the patronising claptrap put out by the National Autistic Society of the UK.
This is potentially misleading. Thomas Insel of the NIH is speaking at the NAA conference. But he is not a member of NAA and it is unlikely that he is going there to endorse the NAA opinion that there is an autism epidemic caused by the mercury content of vaccines, which can be cured by chelation.
The NAS has a research arm called Research Autism. It has a website. None of this US research gets a mention. People with autism are sometimes said jokingly to be on another planet. It must be the one where the NAS is a well-informed, authoritative campaigning organisation and a powerful voice for change.
Research Autism has been established with NAS support but is independent of the NAS. It seeks to promote evidence based research on the efficacy of interventions for autism. If the US research is not mentioned it is because it does not satisfy Research Autism’s criteria for inclusion.
Autistic people sometimes refer to themselves as coming from another planet and they are not joking. They are made to feel like aliens by the lack of understanding and acceptance that they encounter on a daily basis. If the Think Differently campaign helps to change that, both it and the NAS will have nothing to be ashamed of.
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 apear 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.
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.
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.
Today the National Autistic Society launches its “think differently” campaign. We want to spread the word that autism need not be so devastating and disabling if only people would take the time to understand it and make the effort to adapt our schools and workplaces and public spaces to make them autism friendly.
Download the campaign pack and join us. And check out yesterday’s article in the Observer for some useful background information. And for some grim reading about why we need to think differently read yesterday’s blog that features a Sunday Times article on the truly awful Judge Rotenberg Center in America.
Shock Tactics is yet another detailed account of the abuse carried out on people at the Judge Rotenberg Center. Over half the inmates at this institution are wired to a device called the GED that delivers painful electric shocks at the push of a button. At one time the use of electric shocks on severely disturbed children was given dubious justification by the life threatening severity of their self injurious behaviour. Better GED than dead as it were. The reporter, Jennifer Gonnerman, gives credence to this when she writes:
Before we set off on our tour of the institution, there’s something Israel wants me to see: Before & After, a home-made movie featuring six of his most severe cases. He has been using some of the same grainy footage for more than two decades, showing it to parents of prospective students as well as reporters. It shows how in 1977, an 11-year-old girl, Caroline, arrives at the school strapped on a stretcher, her head encased in a helmet. Next, free from restraints, she tries to smash her helmeted head against the floor. In 1981 it shows Janine, also 11, who shrieks and slams her head against the ground, a table, the door. Bald spots testify to the severity of her troubles; she’s yanked out so much hair it’s half gone. Compared with these scenes, the “after” footage looks almost unbelievable: Janine splashes in a pool; Caroline grins as she sits in a chair at a beauty salon.
“These are children for whom positive-only procedures did not work, drugs did not work,” says Israel. “And if it wasn’t for this treatment, some of these people would not be alive.” The video is very persuasive: the girls’ self-abuse is so violent and so frightening it almost makes me want to grab a GED remote and push the button myself. Of course, this is precisely the point.
Then she meets two of these “success stories. “
Considering how compelling the after footage is, I am surprised to learn that five of the six children featured in it are still here. “This is Caroline,” one of my escorts says later as we walk down a corridor. Without an introduction, I would not have known. Caroline, 39, slumps forward in a wheelchair, her fists balled up, head covered by a red helmet. “Blow me a kiss, Caroline,” Israel says. She doesn’t respond.
A few minutes later, I meet 36-year-old Janine, who appears in much better shape. She’s not wearing a helmet and has a full head of black hair. She’s also got a backpack on her shoulders and canvas straps hanging from her legs, the telltale sign that electrodes are attached to both calves. For 16 years – nearly half her life – Janine has been hooked up to Israel’s shock device. A few years ago, when the shocks began to lose their effect, the staff switched the devices inside her backpack to the much more painful GED-4.
The Judge Rotenberg Center no longer restricts itself to severely handicapped children who self harm. More “high functioning” individuals with a range of difficulties including ADHD and Bipolar Disorder get the same electric shock ”treatment” for the most trivial “offences” like getting out their seat without permission.
Matthew Israel, the director and founder of the JRC claims to be a behaviourist in the tradition of B. F. Skinner, under whom he studied in the 1950s. He took up the idea of using electric shock from fellow behaviourist Ivor Lovaas. Lovaas no longer uses electric shocks because:
“These people are so used to pain that they can adapt to almost any kind of aversive you give them.”
Israel met the same difficulty. His answer was to turn up the power and use even more painful devices. What I want to know is how long are we going to put up with college educated professors telling us it OK to inflict pain on the most helpless and vulnerable people in society? Even Dr Bernard of the Maudsley Hospital in London is quoted in the article as saying,
It’s terrible to use something like that without clear evidence to show it works.
There have been attempts to close the JRC. But Israel has always relied on the tesimonials of satisfied parents, motivated by the fear that if JRC closes there is nowhere else for their children. It seems that the only criteria for admission is that you have been written off and rejected by everyone else. Once inside your fate is forgotten.
What I find most inexplicable is the support for JRC by ex inmates. Stockholm Syndrome maybe? This is Katie Spartichino:
Katie, 19, tells me she overdosed on pills at nine, spent her early adolescence in and out of psychiatric wards, was hooked up to the GED at 16, and stayed on the device for two years. “This is a great place,” she says. “It took me off all my medicine. I was close to 200lb and I’m 160 now.” But when she first had to wear the electrodes, she says: “I cried. I kind of felt like I was walking on eggshells; I had to watch everything I said. Sometimes a curse word would just come out of my mouth. So being on the GEDs and knowing that swearing was a targeted behaviour where I’d receive a [GED] application, it really got me to think twice before I said something rude.”
The most chilling part of the whole story is one of apparent tenderness.
As Katie speaks, LaChance runs her fingers through Katie’s hair again and again. The gesture is so deliberate it draws my attention. I wonder if it’s just an expression of affection – or something more, like a reward.
To me, LaChance’s action screams of an abusive relationship, Katie allowing herself to be treated like a child by someone who probably inflicted pain on her in the past. And when Katie admits that she sometimes still swears
The hair-stroking stops. LaChance turns to Katie. “I hope you’re not going to tell me you’re aggressive.”
The last time I heard that voice it was Nurse Ratched in One Flew over the Cuckoo’s Nest.
“Oh, no, that’s gone,” Katie says. “No, no, no. The worst thing I do sometimes is me and my mom get into little arguments.”
Poor Katie, still in fear of that voice, still in thrall. And she is one of the lucky ones. She got out.
JUDGE ROTENBERG CENTER – CLOSE IT DOWN!
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.
Consequently they claim that there are no answers to autism.
Parents are not impressed by this and look elsewhere.
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.
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.
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
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.