Judge Rotenberg Center – latest research

Side effects of contingent shock treatment

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 <https://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.

 

Neuroscience and Autism

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.

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.

Jenny McCarthy: responding to criticism

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.

1. Conventional doctors do not have any answers to autism beyond their prescription pad, which is not very effective.

2. Consequently they claim that there are no answers to autism.

3. Parents are not impressed by this and look elsewhere.

4. 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.

Judge Rotenberg Center again

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.

The costs of autism

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

More than 50 million Americans experienced a medically treated injury in 2000, resulting in lifetime costs of $406 billion; $80 billion for medical treatment and $326 billion for lost productivity.

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

Economic Costs Associated with Mental Retardation, Cerebral Palsy, Hearing Loss, and Vision Impairment

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.

FOOTNOTE

Joseph blogged the US study a year ago. Please read “Debunking the costs of Autism.”

Autism News Beat – A Round Up

NEW BLOGS FOR OLD

There is a new blog on the block. Autism News Beat opened with this.

“I’ve started this site as a resource for journalists looking for accurate, evidence-based information about autism. I plan to review and comment on print and electronic coverage of autism, and interview journalists, editors, and others to gain their perspectives on this much reported but little understood story.”

The second post seemed to recommend the evidence based intervention of ABA over stem cell therapy. In fact the evidence base for ABA is open to question as Michelle Dawson was quick to point out. Her blog, The Autism Crisis, is a useful source of well referenced criticisms of ABA. I suspect that Autism News Beat was probably so impressed by a news report which for once clearly rejected biomedical interventions, that they decided not to highlight the controversy surrounding  ABA. This is akin to backing Stephen Dawkins in an argument against  intelligent design while deciding not to mention his disagreements with fellow evolutionist, Stephen Jay Gould. Disputes within the evolutionary camp are of minor importance compared to the gulf that exists between us and the creationists. Similarly the differences that exist within autism science are clearly of a different order to the differences between autism science and autism woo. [Pace Ms Dawson. Despite the efforts of autism curebies to reduce it to the level of woo, behaviourism is science based.]

RDI

Another news story centres upon the death of an autistic child. Hakeem was not subjected to life threatening interventions to “cure” his autism. He was loved and accepted by  a mother who removed him to America to escape the ignorance about autism that leads people to regard it as a form of demonic possession in Senegal. Similar ignorance exists in parts of America, sometimes with tragic consequences.

Hakeem was not killed by quackery. His death appears to have been a natural tragedy. His mother was so impressed by the progress he had been making following a programme of relationship development intervention that she is returning to Senegal and mortgaging her home to set up a school based upon RDI principles to help autistic children there. I have some doubts about RDI. It comes across as evangelical and expensive. There are no independent studies to support it. But it is better than exorcism or stem cell therapy and I send good wishes to Hakeem’s mother, Sabelle Jelani and to her proposed school.

PC  VERSUS FC?

Another news story centres upon Ralph Savarese, who adopted an autistic child. They apparently made great progress using facilitated communication. The media interest surrounds his book on the subject. I have not read it yet. But I am  thinking that this is yet another approach that helps some individuals but is hyped up as a solution for all individuals and falls into the abyss when these impossible claims on its behalf are dismissed.

DISABILITY RIGHTS KNOWS NO BOUNDARIES.

Leaving autism aside, two other news reports caught my eye this week. One is about accepting people with Downs Syndrome  The early years of Downs Syndrome are reminiscnt of more recent attitudes to autism. In the year of my birth, 1952, the Guardian reports that parents of Downs children were told:

‘Not to worry, there are plenty of places for children like him.’ And she said, ‘In any case, they don’t live long.'”

Attitudes have changed, as the article makes clear.

“Or perhaps, as some of these stories may show, it could be because of a slow but growing understanding that a child born with Down’s syndrome today really does, perhaps for the first time, stand a chance of leading something remotely resembling a decent life.”

Downs Syndrome has not changed. But attitudes have. So Downs kids can now look forward to  decent life. As a consequence parents are no longer desperately seeking amniocentesis and therapeutic abortions in the numbers they once did. The level of Downs births is now constant. The level for positive outcomes is rising. Downs children are no longer routinely sterilized. Some of them may marry or have children.

DISABLED SEX LIVES!

I have seen severely disabled people in wheelchairs go potholing, abseiling and rock climbing. Usually this involves able bodied people and a lot of rope. There is no way they could do it on their own. Sometimes it is the same with sex. But helping a severely disabled person achieve sexual fulfillment involves a far more serious risk assessment than mountaineering. So full marks to Treloars College for tackling this and the Observer for a good job of reporting it. We have nuns arranging for a prostitute to visit a young man so he have sex before he dies, couples being assisted into position and them left alone, even marriage. And what about the possible offspring of these relationships?  If the love and care that facilitated their conception is transferred to their upbringing these will be lucky children.

Another window opens

Early diagnosis of autism brings obvious benefits. It means you can make an early start to understanding your child and meeting their needs. Early intervention is generally agreed to be A Good Thing. Some people take it further and argue that early intervention is The Only Thing. There is supposed to be a limited window of opportunity while the young child’s brain is still developing. During this time intensive behavioural interventions are supposed to have the best chance of success. Success in this context usually means recovery or normalization in which the child becomes indistinguishable from their peers and loses their diagnosis.

There are several reasons to question this scenario. E.g. the window is larger than we think. Brain development continues into adolescence. People who suffer accidental brain damage often manage to regain lost functionality despite loss of brain cells. Brain cells can regenerate, even in adult life. How this relates to autism is not clear cut. But if our brains can change and develop throughout our lives we should expect change and development in the brains and lives of autistic people as well.

I have seen this in the children I teach.  Severely autistic 3 year olds in our nursery  often make amazing progress as they develop and mature. Their degree of cognitive impairment seems a more important predictor of future outcomes than the severity of their autistic symptoms. I see regression as well, especially in the teenage years when the pace of change can trigger all sorts of crises.  It is often temporary, with balance restored by the time they leave us as young adults.

All of this is anecdotal – the impression gained from a quarter of a century in special ed. But a recent study, Change in Autism Symptoms and Maladaptive Behaviors in Adolescents and Adults with an Autism Spectrum Disorder,   provides data to support my impression and extend it into adult life.

Paul Shattuck and his research partners studied a group of 241 autistic people over 54 months. It was a varied group, ranging in age from 1o to 52. The mean age was only 22 so the sample must have contained proportionately more younger than older autistics. The abstract refers to subjects with an autism spectrum disorder and so presumably includes subjects across the spectrum. We learn that 69 per cent have some degree of mental retardation, which suggest there were rather more people with Autistic Disorder than with PDD-NOS or Aspergers.

According to the abstract and the press release from George Washington University the significant findings were that:

• Although many individuals’ symptoms remained stable, a greater proportion of the sample experienced declines than increases in their level of autism symptoms and maladaptive behaviors, and there were significant improvements in mean levels of symptoms.
• Individuals with mental retardation had more autism symptoms and maladaptive behaviors than those without mental retardation, and they improved less over time.
• Compared to adolescents, older sample members (31 and older) had fewer maladaptive behaviors and experienced more improvement in these behaviors over time.

Why some people improve is being investigated as part of the ongoing study. But as it stands this is tremendous news. It means that parents of children who get a late diagnosis have not necessarily missed the boat. Parents of newly diagnosed children also do not need to rush into anything. The window is bigger than you think. Take time to gaze into the window. Learn about your child and choose wisely from the range of options before you.  

This is also good news for autistic adults. The older ones made the most signficant gains. Growing up might be hard but being a grown up is better.

I only hope that the numpties behind anti-vaccine outfits like Safe Minds, Generation Rescue and NAA do not resort to the same lies that they heaped onto Paul Shattuck the last time he published a piece of scientific research that contradicted their prejudices.

Prozac treatment for autism

In yesterday’s Guardian I read that

Thousands of children with autism in the UK could benefit from taking drugs such as Prozac, a US psychiatrist said yesterday.

 Professor Eric Hollander, from the Mount Sinai medical centre in New York, said a third of children diagnosed in the United States were on antidepressants and British children were being under-treated. Although the drugs are not licensed for autism, he said there was evidence they could reduce its symptoms, enabling some children to travel on public transport or go to mainstream schools.

It is argued that those drugs may help autistic children, who are obsessed with routine and get distressed if the unexpected happens.

Doctors in Britain have been warned not to prescribe antidepressants for children and adolescents following evidence that the pills may make them become suicidal. Research Autism, a branch of the National Autistic Society, warned that such drugs had worrying side-effects in autistic children. “We advise caution,” a spokesman said. “There has not been enough research to be able to give a clean bill of health to this treatment.”

Professor David Healy, whose research led to the warnings, said: “These drugs have been around for the last 20 years and if there really was any substantial benefit it would have been found a long, long time ago.”

Prozac was the first “lifestyle” drug. It can be a lifesaver for people with a major depressive disorder but is also used by  well people who would like to feel “better than well.” Widespread use by people with minor problems or no problems at all has fostered the illusion that prozac is a totally benevolent “happy pill.” However Prozac is one of a powerful class of psychotropic drugs, selective serotonin reuptake inhibitors, (SSRIs) that can have dangerous side effects. Sarah Boseley, who wrote today’s piece, wrote another story about Prozac and similar SSRIs causing suicidal thoughts in some people.

Dr Healy says the results of the research should be a warning to GPs prescribing any SSRIs. “They may not all be equally the same,” he told the Guardian. “But the risk holds for the whole of the group. Generally the findings would indicate that women and children and those who are least ill may be most at risk.”

Prozac  now carries a “black box” warning.

Prozac is the only SSRI licensed for use with children in the UK following a ruling by the EMEA, and then only for children over the age of eight with moderate or severe depression who have failed to respond to psychological therapies alone. It should only be given in conjunction with continuing therapy and reconsidered if there is no clinical benefit after nine weeks. There are also questions arising from animal studies about the long term effects of Prozac on emotional behaviour, growth and sexual maturation which require further research and careful monitoring in children taking the drug. So it is unlikely that it will be widely prescribed for autistic children here.

But what about the one in three autistic children in the USA? How many of them are so severely depressed that they need to take SSRIs? How many of them are actually the victims of stress induced by unreal expectations and lack of understanding? Professor Hollander touches on this in an interview with Medscape.

There are some controversies about whether autism — for example, Asperger’s disorder — is just an alternative way of being and whether trying to get rid of target symptoms is not allowing certain patients with Asperger’s to fully express who they are.

My sense is that it’s pretty clear that if we can reduce certain target symptoms, then people will have significantly less distress and their overall level of functioning will improve.

I am not anti-drug or anti-psychiatry. For two years Prozac was my lifeline. But my depression did not begin with a chemical imbalance in my brain. That happened because of the cumulative effect of many external factors, not least of which was the stress involved in a long and unsuccessful battle with the authorities to obtain appropriate provision for my autistic son.

If someone is crying we do not give them a pill to dry their tears. We find out why they are crying and try to remove the source of their unhappiness. When it comes to autism we should begin by putting more effort into fixing the situation that these children and adults are often forced into and not automatically assume that they are the ones who need fixing and that we have the wherewithal to do it. If we can identify and alleviate sources of stress in the lives of young autistic children we may reduce the likelihood that they will need medication as they get older.

shades of grey on the autistic spectrum.

The discussion at the Guardian on curing autism that I blogged yesterday threw up the old chestnut that we have a severe form of autism where children are non-verbal, prone to self injury and violent tantrums and not even toilet trained. On the other hand we have a mild form, known as Asperger Syndrome, where quirky individuals struggle with social skills but are basically OK. Unlike the severely autistic kids, they don’t need a cure. But because they don’t need it they want to deny it to the kids who do need it.

This argument assumes that we have this clearcut break between the two forms of autism. It also asumes a worse case scenario for all those with severe autism and that life is a peach for the mildly affected asperger types. Reality is, of course, somewhat different. For a start autism is a spectrum disorder. It exists on a continuum with no clear cut dividing lines. Secondly, it is dimensional rather than categorical. People of a certain age [over 50s like myself] will remember the old stereograms with a simple bass/treble control. It was either/or. Then we got music centres with graphic equalizers where you could independently manipulate half a dozen individual variables. This serves as an analogy for autism. Once upon a time we thought it was either/or. Now we know it is a lot more complicated than that.

I get to see this all the time. I teach in one of the five designated special schools in my county. Our special schools are for childen who used to be described as retarded but are now described as having severe and/or complex learning difficulties. Many of them are also autistic. Since September 2004 I have had 43 children in my class. Out of 43 pupils 18 are autistic. My county has a very parsimonious record for funding out of county residential placements; 10 children at the last count. So it is safe to assume that my class records account for most, if not all, of the severely autistic 11 and 12 year olds with learning difficulties in my school’s catchment area.

So what do these guys look like? I did a quick survey, dividing them up into autistic [ASD] and non-autistic [NT]. then I counted up 5 categories of behaviour.

1. toileting
2. language
3. behaviour
4. self injury
5. none

Some children feature in more than one category. Those in ‘5. none’ still have severe cognitive impairments.

Three things strike me from this highly anecdotal ‘research’ of mine.

1. The behavioural markers that come up so often in popular debate; toileting, speech, tantrums and self injury; are not more prevalent in autistic children than they are in other children with cognitive impairments. [And, curiously, these popular criteria for autism are not the same as the official criteria of DSM-IV and ICD-10.]
2. A significant minority of kids with ASD and almost half of the kids without autism had no severe problems in the four areas of toileting, speech, behaviour and self injury.
3. Something that is not obvious from the chart, but some of the most challenging pupils in behavioural terms were also  amongst the least impaired in other areas.

OK. This was a small sample and lacked a control group. If I had done this 5 years ago there would have been more self injury amongst the autistics and less with good languge skills. But I stand by my belief that the negative outcomes that are so vigorously promoted as an inevitable adjunct of autism are just as likely to be related to level of cognitive functioning. Even then, they are are not typical of either autism or of severe mental retardation. There are shades of grey on the autistic spectrum.

Autism … it’s not what you think

HBOT autism and the NHS

The National Health Service [NHS] in the UK prides itself on delivering healthcare that is free at the point of delivery but paid for out of general taxation. Despite occasional lapses into the land of woo, as with  homeopathy on the NHS , it generally fulfils its duty to provide value for money for the taxpayer and cost-effective treatment for the patient. 

Judith Duffy writing in today’s Sunday Herald, reports that the NHS is to investigate the effectiveness of Hyperbaric Oxygen Therapy.  [HBOT] According to the Herald:

Hyperbaric oxygen treatment involves administering pure oxygen under increased atmospheric pressure while the patient is enclosed in an airtight chamber. This results in higher levels of oxygen getting into the blood stream, which can assist the healing process of damaged tissues.

The Herald again:

Hyperbaric oxygen therapy was initially developed to treat cases of divers suffering from decompression sickness, but has since been used for other conditions such as multiple sclerosis and cerebral palsy. However medical opinion is divided over its effectiveness.

Now a new study by NHS Quality Improvement Scotland (QIS) will assess how successful and cost-efficient the therapy is for a range of illnesses and publish a set of guidelines to be used by doctors in the UK and internationally.

The full protocol for the study is available on line as a PDF file. Interestingly, it limits itself to the use of HBOT in adult subjects [16+] as did this review by the US Dept. of Human Health and Services. [HHS] And  a recent report from the 7th EUROPEAN CONSENSUS CONFERENCE ON HYPERBARIC MEDICINE (2004) did not contain any recommendations for use with specifically pediatric complaints. In fact it specifically recommended against the use of HBOT for cerebral palsy.

It also recommended that

The hyperbaric therapeutic facilities enter one of the following categories:

•  hospital based or hospital connected.
• stand-alone.

Stand-alone facilities can treat patients not critically ill, but must be capable of providing care in case of clinical complications.

This is important. Many parents of autistic children are buying HBOT chambers. One advocate for the Defeat Autism Now! campaign has even installed one in a school. 

I doubt that any of these installations are “capable of providing care in case of clinical complications.” I also wonder at the health and safety implications. Oxygen is a highly combustible material. My mother has to observe strict guidelines on the use of oxygen cylinders for her chronic pulmonary disorder.

Health and Safety notwithstanding, is HBOT any good for autism? Probably not, if the claims made by its proponents are anything to go by. Autism Street recently blogged on some of the more absurd claims of the autism HBOTters.

Meanwhile, I am looking forward to next February when NHS QIS publishes its recommendations. Unlike many purported interventions for autism HBOT is not quackery. It has a respectable track record in treating specific traumatic injuries. But it is being hyped as a miracle cure for conditions as diverse as multiple sclerosis and retinitis pigmentosa.

I wonder how the “autism is treatable” crowd will react to its findings. Their most common complaint is that the medical establishment does not take them seriously and will not investigate the efficacy of the treatments they espouse. Well on this occasion it does and it has. How seriously will they take its judgement?

I suggest that their response will provide an indication of how seriously we should take them. And I will add a prediction. Anything less than a glowing endorsement will be taken as proof positive of a government/big pharma conspiracy to hide the truth and sacrifice a generation of children on the altar of corporate greed.

The socialist in me would love the chance to beat the evil capitalist drug companies with any stick that came to hand. I just need to know that it’s a proper stick and not one that will break in my hands.

According to the Herald most people are holding a watching brief.

Dr John Ross, honorary consultant at NHS Grampian, said:

“There are a number of conditions that hyperbaric oxygen is thrown at, which are commonly incurable, but with really very little indication currently that hyperbaric oxygen does anything,” he added.

That view was backed by Capability Scotland, which said that it would not recommend the treatment for cerebral palsy, as there was only “poor quality” or anecdotal evidence for its effectiveness.

Mark Hazelwood, director of MS Society Scotland, said that some people who used hyperbaric oxygen therapy for treatment of multiple sclerosis reported an improvement in their condition.

But he added: “The clinical evidence supporting the efficacy of treatment for people with MS is certainly limited, so we welcome this review and hope that it will help to clarify its effectiveness.”

As is their wont, newspapers always try to find or manufacture an opposing point of view. They claim to do this in the interests of balance but often seem  to relish the controversy that results.

So I have no idea whether  Philip James, professor of hyperbaric medicine at Ninewells Hospital, Dundee is presenting a balancing viewpoint or being used to stir up an argument when he is quoted thus.

“We are dealing with a primary failure of medical education – I call it a black-hole’ in medicine.”

I will wait and see what he has to say in February.