Action for Autism is moving. And it has its own name now.
I look forward to seeing you there.
Action for Autism is moving. And it has its own name now.
I look forward to seeing you there.
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.
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.
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 <firstname.lastname@example.org> if they have anything to offer to this project.
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.
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.
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.
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.
I am familiar with two studies that make a serious attempt to estimate the costs of autism – one in the USA and one in the UK. These figures look quite alarming: 3.2 million US dollars or 2.4 million UK pounds over a person’s lifetime. The UK figure is used to argue for an increase in our low level of funding for autism research. The US figure is used to defend their significantly higher level of spending. While I support the need for more funding for autism research I have some problems with the way these figures are arrived at and with the way they are used.
These lifetime costs are sometimes used alongside estimates of annual costs to the economy. In the USA this works out at 35 billion dollars. That sounds even more alarming until we remember that
So autism, affecting 2 million people, costs the US economy 35 billion dollars a year. But in a single year, injuries affecting 50 million people cost the US economy 406 billion dollars. Where are the headlines and congressional commitees on that one?
Regarding the figures, the US study assumes a roughly 50/50 split between severely and mildly affected individuals as defined by their monetary cost to society. The much higher figure for average lifetime costs in the UK may be a reflection of the more generous provision of our welfare state. It is also based on an outdated 75/25 split in favour of severe autism. [3 million UK pounds versus 750,000 UK pounds] Epidemiological evidence suggests that between 15 and 20 per cent of autistic individuals are also mentally retarded. These are the ones who are not only unlikely to work but may also require lifetime care in some sort of group home or supported living arrangement. That is the inverse of the UK assumption. So, on closer examination, maybe the figures are not so alarming after all.
We also have to offset the figures for severe autism with the similar numbers of autistic individuals who may eventually become “indistinguishable from their peers” at least in respect of their need for services and support. Tony Attwood (slide 13) argued that maybe 20 percent of autistic children move “up” and possibly “off” the spectrum over their lifetime at the NAS International Conference in London in 2005. And recent research on diagnostic stability tends to support him.
And then there is the nagging question of the CDC enquiry into the
This found the following lifetime costs.
If you add the totals for four children, one each with MR, CP, hearing loss and vision impariment, it is very close to the alleged cost for a single autistic child! Someone is egging the pudding here!
Some of the elements within the figures are open to question. The US figures include 200,000 US dollars for ABA included in medical costs alongside 150,000 US dollars for education. Are these actual or notional figures? How many autistic children get ABA? How many get additional funding for their special educational needs? I have met very few prents who are satisfied with the level of provison for their autistic child.
1.8 million US dollars is almost equally divided between indirect societal costs attributable to the autistic person and indirect societal costs attributable their carers. This seems to be almost entirely based upon loss of earnings and lost productivity. But where are the measures that account for the positive impact of autism on the economy in terms of employing such a vast array of therapists and stimulating so much research into the human brain with unquantifiable impact on the whole area of neurological reasearch? I could also find no indication in either study that that they had attempted to factor in the positive contribution that autistic people might make to the economy.
Yes we do need more money for autism reasearch. But we also need more money for autism services. Presenting autism as a drain on the economy to frighten governments into funding more research into possible prevention and cure does nothing to help existing autistics and their families find support services in the here and now. And if the lifetime costs are so high where is this money going? Why are autistic people and their families so often left leading miserable lives?
If ABA and education do cost a combined 350,000 US dollars for every autistic child why not just write a cheque on the day of diagnosis? Let us see if the parents can spend it more wisely and more productively than the state. At the very least there would be a saving on lawyers fees (on all sides) for contested IEP meetings. And if it costs society 1.8 million US dollars in lost productivity for autistics and their carers just put half a million dollars in trust for every autistic child on the day of their diagnosis. At 5% interest that should yield around 1 million US dollars over 15 years. If we are going to spend so much money on autism, let us spend it effectively.
Joseph blogged the US study a year ago. Please read “Debunking the costs of Autism.”