Category Archives: autism

What Doctors Don’t Tell You is wrong about autism.

What Doctors Don’t Tell You (WDDTY) is a magazine that claims it is “helping you make better health choices.” But it has drawn criticism from those like Andy Lewis who wrote on the Quackometer blog,

this magazine is the latest offering from Lynne McTaggart who produces the What Doctors Don’t Tell You website. It is one of the most consistently misleading health sites in the UK, reveling in misinformation that routinely undermine readers’ confidence in their doctor and to scare them into accepting questionable alternatives, such as vitamin pills. The website and magazine advertises many problematic health products that could harm people if used in place of real medicine.

I have just bought a copy from my local supermarket. It is a glossy magazine with lots of adverts and articles promoting diets, vitamins, supplements, creams and  lotions, super foods, exercise regimes and holistic therapies. There are even alternative remedies for pets. It is not always clear where editorial content ends and advertising begins. The pet therapies are a case in point. Paul Boland contributes a two page spread on veterinary acupuncture. Turn over and there is a full page advert for Natural Health Vet, a company selling products “developed, used and recommended by …” Yes, you guessed it, Paul Boland. Advertorial, anybody?

The headline story is called, “Reversing osteoporosis. You can rebuild your bones.” It tells us that osteoporosis is “a lifestyle disorder” that is reversible by following a diet, supplement and exercise plan. We are told that Linus Pauling was right. Cancer is curable with high dose Vitamin C. But you have to inject it, not ingest it. An osteopath writes an article claiming you can cure whiplash with osteopathy. Lifestyle changes can reduce your risk of dementia by 60%.

Like most people who pick up magazines in supermarkets I am not a doctor and have no way of evaluating these claims. I have no argument with healthy eating and regular exercise. But I am suspicious of claims that doctors and drug companies are in it together to spread misleading information and promote the use of profitable but unnecessary medications. However this issue does contain an article on autism, which is why I bought it.  And I do know enough about autism to critically read that article. And if WDDTY is wrong about my area of expertise why should I believe them about anything else?

The Autism Explosion

This month (April 2014) the print edition of WDDTY features an article entitled “Autism: it’s all in the gut,” which begins with a familiar claim.

There’s one startling fact about autism that marks it out from all the other chronic diseases of modern times – the explosion of cases over the past 30 years.  Back in 1985, just six children out of every  10,000 were diagnosed with autism; today one in every 88 children has the condition, and some reckon it affects one in 50 children.

I have four problems with this statement, apart from the fact that it is wrong.

  1. If you are going to compare statistics do not make your readers do the math. Make the comparison obvious. 1 in 88 equates to 112 in 10000 which makes for easier comparison with 6 in 10000.
  2. Source your statistics. There are a number of references at the end of this article. But none are given for the epidemiological data. Hence the reader cannot check its accuracy.
  3. Use real statistics. WDDTY is a UK publication and the key data points for autism epidemiology in the UK are 4.5 in 10000 (Lotter 1966); 21.2 in 10000 (Wing and Gould 1979); 116 in 10000 (Baird et al 2006). All these studies are referenced on the National Autistic Society website. None of them are mentioned by WDDTY.
  4. Make sure you are comparing like with like. Wing and Gould found similar results to Lotter when they used his criteria. But a broader definition of autism produced their higher figure. Baird used different criteria again (ICD-10) and found 38.9 in 10,000 for childhood autism, and 77.2 in 10,000 for other autism spectrum disorders. WDDTY use headline figures for all autistic spectrum disorders and pretend they are referring to the narrow definition of childhood autism used by most researchers for 40 years after Kanner’s original description of autism in 1943.

There may or may not have been an actual increase in autism over the last 30 years. But there are alternative explanations for the increase in numbers.

  1. If you go out and look for autism in the general population you will find more cases than if you sit in your office waiting for patients to arrive. Studies that screen whole populations and directly assess individuals identified in that screening process produce higher figures than studies that interrogate patient databases.
  2. If you change the criteria for autism you can engineer dramatic increases as demonstrated by Wing and Gould in their Camberwell study. Using Lotter’s strict criteria they found 4.9 in 10000 which compares well to Lotter’s finding of 4.5 in 10000. But  by including all children identified with the now familiar triad of impairments, regardless of whether or not they met Lotter’s criteria, they found a four-fold increase. This is easy to understand if you compare the criteria. Lotter required “a profound lack of affective contact.” The triad refers instead to impairments in ability.
  3. The success of  advocacy groups in raising awareness has led to better estimates of the numbers. Autism statistics were just not collected thirty years ago and are still not in many countries. Without numbers there is no impetus to create services. But once services exist they drive the numbers up. California’s autism statistics were used to fuel claims for an autism epidemic until it was pointed out that the massive unevenness in rates within California coincided with the availability of services in affluent areas (high rates) and the lack of services in poorer areas (low rates). Those states in the USA with a reputation for providing good autism services have higher rates than the national average. In the UK 40 years ago autistic children were denied access to education. Now a diagnosis is a passport to special educational provision, albeit of variable quality,

All of which gives me cause to question that sentence at the beginning of the WDDTY article.

There’s one startling fact about autism that marks it out from all the other chronic diseases of modern times – the explosion of cases over the past 30 years.

Its All In The Gut

WDDTY argues that

New research is narrowing the focus to the gut. Many autistic children have a host of gastrointestinal (GI) problems that carry on into adulthood, and some of the worst symptoms seem to improve if the diet is changed, often to exclude gluten.

The GI narrative has a long history and very little definitive evidence to support it. In 2010 a Consensus Report by 28 doctors and researchers published in Pediatrics, the Official Journal of the American Association of Pediatrics, concluded that most studies suffered methodological limitations. Small sample sizes, lack of a control group, failure to apply standardized definitions of GI disorders and of severity of autistic symptoms were commonly cited. The consensus was that GI symptoms were probably more prevalent in people with ASD but we did not know for certain and could not say why. Among the 23 consensus statements the following are most pertinent to our present discussion.

Statement 1 (Key Statement)

Individuals with ASDs who present with gastrointestinal symptoms warrant a thorough evaluation, as would be undertaken for individuals without ASDs who have the same symptoms or signs. Evidence-based algorithms for the assessment of abdominal pain, constipation, chronic diarrhea, and gastroesophageal reflux disease (GERD) should be developed.

This is the key statement. Too often GI symptoms in autistic patients are misinterpreted as behavioural manifestations of autism and treated accordingly. This is most likely to happen in young children and others who are unable to verbally describe their symptoms. The symptoms continue unabated and may worsen. Caregivers then turn to practitioners of alt-med, like the purveyors of WDDTY, who persuade them that these GI symptoms are not the result of autism but its cause. And of course they have the explanation and the cure. But other consensus statements from the AAP undermine this simplistic perspective.

Statement 4

The existence of a gastrointestinal disturbance specific to persons with ASDs (eg, “autistic enterocolitis”) has not been established.

Statement 5

The evidence for abnormal gastrointestinal permeability in individuals with ASDs is limited. Prospective studies should be performed to determine the role of abnormal permeability in neuropsychiatric manifestations of ASDs.

Statement 11

Anecdotal reports have suggested that there may be a subgroup of individuals with ASDs who respond to dietary intervention. Additional data are needed before pediatricians and other professionals can recommend specific dietary modifications.

Statement 12

Available research data do not support the use of a casein-free diet, a gluten-free diet, or combined gluten-free, casein-free (GFCF) diet as a primary treatment for individuals with ASDs.

Statement 18

The role of immune responses in the pathogenesis of gastrointestinal disorders in individuals with ASDs warrants additional investigation.

Statement 19

The role of gut microflora in the pathogenesis of gastrointestinal disorders in individuals with ASDs is not well understood.

This is serious work. There were seven working parties reviewing the expert literature in their fields: child psychiatry, developmental paediatrics, epidemiology, medical genetics, immunology, nursing, paediatric allergy, paediatric gastroenterology, paediatric pain, paediatric neurology, paediatric nutrition, and psychology.

Antibiotics and Processed Food

Yet WDDTY chose to ignore them completely. Instead they make this claim for a study of 20 autistic children entitled “Reduced Incidence of Prevotella and Other Fermenters in Intestinal Microflora of Autistic Children.”

The findings suggest that an overuse of antibiotics and  the typical Western diet of processed foods could be significant factors in autism.

But the study specifically excluded children who had received antibiotics in the previous month on the grounds that antibiotic usage would have confounded their results. Moreover the study is clear that its autistic subjects do not follow a typical western diet. Five of the twenty were on a gluten free, casein free diet at the time of the study compared to one in the neurotypical control group (n=20). 13 were taking additional supplements compared to 5 in the control group. Taken overall the autistic group consumed more probiotics and more sea food than the control group. Nearly all the parents of the autistic reported problems with the amount their child ate and their child’s restricted diet. This data was not available for the control group. From this it is reasonable to assume that their atypical diet was more likely to contribute to their atypical microflora than the “typical western diet of processed foods” consumed by the typically western control group.

While the autistic group did have significantly higher GI symptoms than the control group there was no relation between the severity of GI symptoms and the severity of their autism. All of which gives me cause to question the statement that

The findings suggest that an overuse of antibiotics and  the typical Western diet of processed foods could be significant factors in autism.

Gluten and Casein

WDDTY believes another study supports their suggestion that antibiotics and processed food are significant factors in autism. In fact it does nothing of the kind. It does not mention antibiotics and did not collect data on or control for variation in diet. It included four children on a gluten free diet “Because the effect of gluten-free diet on antibody levels in autism is not known.”

It tested autistic children for antibodies in their blood associated with celiac disease and compared them with normal controls. Despite higher levels of antibodies to gluten in the autistic group none of them had celiac disease. There are problems with this study. All 37 autistic subjects were recruited in the USA. But 62 out of 74 members of the control group were recruited in Sweden. Why? And there was no data on the GI disorders in the controls despite extensive but incomplete data on the autistic group. I agree with Laurent Mottron who commented on the study.

These data are uninterpretable in their relation to autism without a non autistics comparison group matched in gastro-intestinal problems, (using the same instrument of course).

But WDDTY did not cite these studies to prove a point. They are included because they bear some relation to the subject and seem to show that WDDTY have done their research. WDDTY rely on their readers not following up on references and reading the actual studies. I very much doubt whether the author read them either.

Meanwhile back in the UK

WDDTY turns to

researchers at the Autism Research Unit at the University of Sunderland, now working as ESPA Research.

This was an offshoot of the university that now operates under the auspices of ESPA since its driving force, Paul Shattock, has retired from his position in the Pharmacy department at the university. I know Paul Shattock. He has an autistic son and set up ESPA to provide educational services for autistic people in the Sunderland area. For this and other services to autism he received a well merited OBE. For a while I was sympathetic to his opioid excess theory of autism causation, often referred to as the Leaky Gut Theory of Autism. But other researchers have tried and failed to replicate his findings.

The theory has been around for a lot longer than the fifteen years cited by WDDTY. I bought a copy of the pamphlet, “Autism as a Metabolic Disorder” from Paul Shattock in 2002 when I was in Sunderland to see if ESPA could provide a suitable placement for my son. Mine is the second edition (May 2001) and even then it stated that the Autism Research Unit had been testing samples for fifteen years. But the theory is older than that. According to the pamphlet

This model is based upon acceptance of the opioid excess theory of autism as initially expounded by Panksepp (1979) and extended by Reichelt (1981)  and ourselves (Shattock 1991).

When I first entered the online autism world of newsgroups and email listservs back in 1997 the leaky gut theory was very popular with parents. It went like this.

  1. Some children have difficulty digesting the proteins gluten (found in grains like wheat and barley) and casein (found in dairy products).
  2. This leads to an excess of peptides in the gut.
  3. If the gut wall is damaged these peptides will leak into the bloodstream and cross the blood brain barrier.
  4. Once inside the brain they either imitate the activity of opioid peptides occurring naturally in the brain or bind to the enzymes that normally break down these naturally occurring opioid peptides.
  5. The result is the same: excess opioid activity in the brain.
  6. This explains the “autistic” behaviour of sufferers. They are like drug addicts who swing between being “high” on the peptides or doing “cold turkey” when they need more peptides. This may also explain some of the cravings for dairy and grain based products in autistic children.
  7. Remove gluten and casein from the diet and the symptoms will diminish.
  8. But they may get worse initially when the “cold turkey” phase kicks in.

This hypothesis was attractive to parents because it seemed to fit their experience; children with food fads or a history of being picky eaters, who appeared to suffer from disruptions to normal perceptual, cognitive, emotional and social development with resultant mood swings and behavioural difficulties. But the hypothesis proved rather too flexible.

The initial theory suggested that children who were prone to infections would have their gut damaged by antibiotics which destroyed the good bacteria in the gut and let the bad bacteria take over.  Yeast and other fungal agents were also suggested as potential villains. So you had to repair and restore the gut to good health while removing the gluten and casein from the diet. Vaccines, particularly MMR, were also implicated based on parental reports. The measles virus from the vaccine was supposed to invade the gut and damage it. So was the damage bacterial, fungal or viral? The picture was further confused by arguments that it was the measles virus that invaded the central nervous system and led to  the autistic symptoms by causing encephalitis. Then came attempts to synthesize all this with a hypothesis from the USA that the mercury content in some vaccines was to blame. Either it induced mercury poisoning in vulnerable children which was mistakenly diagnosed as autism or it acted to make the gut more susceptible to damage from the MMR vaccine.

Pick a card, any card …

Real science, when faced with conflicting and sometimes contradictory theories, tries to control for all the variables and test each one in turn. What is the evidence for leaky gut in autistic subjects? Is leaky gut caused by bacterial, fungal or viral factors? Can we detect excess opioid activity in the brains of autistic people? Given that autistic people are supposed to suffer the double whammy of leaky gut and gluten/casein intolerance what is the evidence for a “single whammy” (either leaky gut or gluten/casein intolerance) in the non-autistic population?

WDDTY does not ask these questions. It does not ask any questions. Instead we are asked to accept that all the theories of causation promoted by the alt-med community are equally valid. There is no conflict between them. Choose a theory, any theory. You pays your money (in most cases a lot of money) and you takes your choice. Any number of therapies may help: vitamin D therapy; gluten and casein free diet; supplements; sensory enrichment (which just snuck in with no mention in the main article of the genuine sensory difficulties in autism); chelation therapy – the  removal of toxic heavy metals like mercury that are alleged to be there in excessive quantities in autistic children.

The Bits on the Side

The article includes two sidebars. One is a puff piece for a book in defence of Andrew Wakefield and the role of vaccines in autism by a quacktitioner called Graham Ewing of Montague Healthcare, a one man operation that he runs from his family home in a village near Nottingham, who promotes his own “virtual scanning” technology as a cure-all for most things. If your credulity is already stretched prepare for it to be snapped by Dr Weinberg and his NeuroModulation Technique™ which has reversed autism, cured arthritis, Crohn’s disease, IBS and other inflammatory disorders. Moreover the person being treated does not have to present for the treatment. The therapist can test functioning by muscle-testing their own arm and transmit their therapy by the power of thought. As WDDTY states in its intro to this sidebar

People of a logical, dogmatic or sceptical disposition, please look away now.

Yes. please do. And on this evidence I suggest that we continue to look away and dogmatically insist on evidence based science to guide our health choices rather than the “good old fashioned medicated goo” on offer from WDDTY.

Susan Boyle and Asperger Syndrome

Susan-Boyle-at-home-008

In today’s Observer Magazine there is an article about Susan Boyle in which she reveals her recent diagnosis with Asperger Syndrome. She found fame and fortune 4 years ago on the talent show, “Britain’s Got Talent.” Now age 52, she is a best selling recording artist and a multi-millionaire. So why does she need a diagnosis? Susan’s answer is instructive, and a valuable lesson for all who question why we would ever seek to label our child or ourselves.

“Asperger’s doesn’t define me. It’s a condition that I have to live with and work through, but I feel more relaxed about myself. People will have a greater understanding of who I am and why I do the things I do.”

Without the diagnosis other people wrongly labelled her. At school she was “Simple Susan”. News stories have speculated about her supposed learning difficulties or alleged brain damage. <sarcasm> Clearly there has to be a reason why a plain thinking, plain looking, middle aged women can sing with the voice of an angel. </sarcasm> I only hope that the media circus does not now use Asperger Syndrome as an excuse to dismiss Susan Boyle, the person and describe her singing ability as a “special talent” or “savant skill” that belongs to autism and not to her.

If truth be told, I am not a fan of Susan Boyle, the singer. But after reading this article I am definitely a fan of Susan Boyle, the person. I agree with the author that she is warm, kind, empathic and intelligent. She has battled with prejudice. She has coped with personal tragedy and depression. She admits to feeling some anger after her struggles to overcome ageism, sexism and disableism in order to be recognized, not just as a talented singer but, more importantly, as the thoroughly decent and worthwhile person she is.

Autism: Challenging Behaviour

Introduction

Michael Fitzpatrick is a retired GP with a profoundly autistic son. Mike is also the author of MMR and Autism: What Parents Need to Know and Defeating Autism: A Damaging Delusion. He usually writes for Spiked Online. But he has asked me to host his review of a recent BBC4 documentary, Autism: Challenging Behaviour. The programme claimed to be a

Documentary exploring the controversy around ABA (Applied Behaviour Analysis), an intensive intervention used to treat autism, by meeting people who are both pro- and anti-ABA.

Applied Behavioural Analysis is a system of instruction devised by Ivor Lovaas that  is based on B. F. Skinner’s theory of operant conditioning. Its supporters are wont to claim that it is “the only scientifically proven therapy for autism.” Here is a typical offering from Families for Early Autistic Treatment (FEAT) in British Colombia, who are part of a campaign to have ABA mandated as a necessary medical treatment for autism in Canada.

Effective, scientifically backed treatment for autism exists (the “Lovaas” Method – a form of Applied Behavior Analysis). Lovaas behavioural treatment for autism is medically necessary and prescribed by physicians because it is the only treatment available that significantly improves this biological disorder. Lovaas behavioral treatment for autism is the most thoroughly documented treatment of children with autism. Scientific studies document a 47% recovery rate from autism and a near 100% improvement rate for children who receive Lovaas early treatment.

In the United States there is a campaign to compel health insurance companies to include ABA as a medical intervention for autism, ABAmaCare if you like. These campaigns are not without controversy. Michelle Dawson, an autistic individual and autism researcher in Canada is perhaps the most eloquent advocate who challenges the scientific and ethical foundations of ABA. She is not alone. But the BBC4 documentary made no reference to Michelle’s critique of ABA.  It followed the more familiar route of human interest documentaries. The case for ABA was made using heart warming individual success stories, balanced by critical remarks from autism experts who questioned its scientific and ethical credentials. No prizes for guessing who won. So thank you Michael Fitzpatrick for eschewing emotional appeal and providing us with this critical review of the documentary.

801221895Autism: Challenging Behaviour

Producer/Director: Fran Robertson

BBC4, 5 November 2013

Fran Robertson’s documentary tells the story of two engaging little boys with autism – Jack aged three, and Jeremiah, four – who attend Treetops school in Thurrock, Essex, the only state school in the country in which the curriculum is based on the intensive behavioural techniques of Applied Behaviour Analysis (ABA). Blonde with an angelic smile, Jack responds with tantrums and projectile vomiting to any food beyond a highly restricted liquid diet. Dark-haired and bright-eyed Jeremiah seems to inhabit a ‘world of his own’ from which his Indian parents struggle to engage him. In the course of the film we follow the attempts of teachers and teaching assistants to overcome these boys’ behavioural and communication difficulties through the techniques of ABA.

The film explores the long-running controversy around ABA through interviews with academic critics and adults who have been diagnosed with autistic spectrum disorders, including one mother who was diagnosed with Asperger’s syndrome following her son’s diagnosis. Early forms of ABA, which emerged from the pioneering work of the Norwegian psychologist Ivar Lovaas in California in the 1960s, were condemned for using punitive ‘aversive’ techniques. Though these have long been abandoned, critics still claim that ABA is dehumanising, seeking to ‘normalise’ autistic behaviours – such as repetitive, self-stimulatory, activities – which are functional for people with autism.

Another area of controversy around ABA – the question ‘does it work?’ – is avoided in this documentary, which tends to take at face value the assertion by campaigners, teachers and parents committed to this approach that it is effective. Much research, summarised in two recent systematic reviews, has failed to provide categorical endorsement. Studies show that while some children with autism benefit from ABA, some do not; some benefit more than others; and some children make progress without intensive behavioural intervention (and to a degree comparable with those who receive it). The problem is that we still do not know how to identify which children are most likely to benefit from ABA and which from other forms of intervention, or what particular aspects of the ABA approach are likely to benefit particular children.

At the end of Autism: Challenging Behaviour, we see Jack cheerfully tucking in to sausage, beans and chips with his mother and Jeremiah playing happily with his parents. But this emotionally manipulative presentation of ABA takes little account of the experience of many parents – that of limited progress despite immense efforts and of disappointment at their failure to achieve the promised outcomes.

The uncritical advocacy of ABA goes even further in a number of episodes featuring the Scandinavian therapist Gunnar Frederickson, who follows in the dubious tradition of campaigners who claim that ABA can achieve “cure” or “recovery” from autism. As British autism expert Rita Jordan has observed ‘the whole ABA movement appears increasingly more like a cult than a science’. Charismatic, dogmatic and sanctimonious – and with a passing resemblance to the rock’n’ roll philanthropist and activist Bono – Frederickson takes the film crew to the scene of his greatest triumph over autism. We meet a 16 year old boy, treated by Frederickson at the age of three when his parents were told he was ‘unlikely to speak’. He is now ‘indistinguishable from his peers’ and a member of the Swedish badminton team. He lives with his happy family in a beautiful, spacious, white house (in stark contrast to the dark, cramped and impoverished conditions in which we see some of the British children with autism are living). While any sceptical observer would want to know more about both the original diagnosis and the current level of functioning, it is the wonder cure that makes good television – and guarantees continuing demand for ABA, despite the lack of scientific evidence for its efficacy.

It is important to note that some proponents of ABA – such as Professor Richard Hastings – repudiate both the ‘normalising’ and the ‘cure’ agenda: ‘just because some individuals or organizations argue that ABA can lead to some sort of recovery from autism does not mean that this is what ABA is all about.’

Michael Fitzpatrick 6 November 2013

Further reading:

Howlin P., Magiati I., Charman T.(2009). Systematic review of early intensive behavioral interventions for children with autism. American Journal on Intellectual and Developmental Disabilities. 114(1), pp. 23-41.

Spreckley M., Boyd R.(2009). Efficacy of applied behavioral intervention in preschool children with autism for improving cognitive, language, and adaptive behavior: A systematic review and meta-analysis. Journal of Pediatrics. 154(3), pp. 338-344.

Prof Hastings blog: http://profhastings.blogspot.co.uk/

Michael Fitzpatrick, ‘The Lovaas cure: ABA is it a fad?’ in Defeating Autism: A Damaging Delusion, Routledge, 2009, p138-141.

Furness National Autistic Society Push for Action

furness pushThe National Autistic Society has been running an unusual campaign, Push for Action, that is probably one of it’s most successful in terms of participation and outcomes. That is not what makes it unusual. The NAS has a track record of successfully running campaigns that impact upon public policy regarding autism. Its most high-profile success to date was the campaign to get the Autism Act onto the statute books. This Act specifically tasks relevant government departments, along with local health and social services with identifying the needs of autistic adults and taking steps to meet those needs. Unfortunately, implementation of the Act has taken place in the context of the severest cut back in public spending ever that flowed from the financial meltdown of 2008 and the subsequent years of economic recession.

Which brings us back to Push for Action. The most important component of the Autism Act was an obligation on government to develop a coherent strategy for supporting adults with autism. That strategy is up for review next year. It is not perfect but the fear is that the government will use the economic crisis as an excuse to lower expectations and further weaken the provisions of the strategy. Push for Action is a response to that. What makes it unusual is that, instead of targeting senior politicians and civil servants in central government the campaign has been deliberately local. The success of the Adult Strategy depends on what happens in local health authorities, local government commissioning agencies, local education and housing departments. So people have organized locally

1. to identify good practice and celebrate it

2. to put pressure on local bodies that are not yet meeting their legal commitments

3. to raise awareness and understanding of the problems that local adults with autism have to deal with.

One brilliant idea has been the travelling Push for Action Button. Nicknamed Jenson, after the eponymous formula one racing driver, it has toured the country, providing a focus for local campaigners and helping to bring campaigners together from around the country. I saw this at first hand when Jenson came to Barrow-in-Furness. Furness NAS had already been busy signing up supporters and also has links with the local police going back to the launch of an autism alert card by Cumbria Constabulary in conjunction with the NAS. So when they knew that Jenson was coming they arranged for the news to be projected on the side of Furness House in the town’s main square from an upstairs window in the local police station. projection

I heard about it in a tweet on Tuesday night while sharing a pint with Tom Madders, who leads the campaign team at the NAS and was in Barrow for a Push for Action event the following day. We headed over to the town centre and met up with Piers Wright, who had carried the Button over from Sunderland that evening.

Piers and @TomMaddersNAS #pushforaction in downtown Barrow-in-Furness.We made the most of this photo opportunity and then had another beer to discuss the campaign. I was impressed by the enthusiasm of Tom and Piers, following a punishing schedule around the country (Sunderland, Barrow, Carlisle, Liverpool, Birkenhead in three days was just this segment of the tour) They were impressed by the enthusiasm of the NAS jenson1members and branches around the country and the warm reception from other autism organizations like Sunderland’s Autism Research Unit and Autism in Mind who had turned out to welcome Jenson and add their weight to the campaign. And this local campaigning is having an effect. Areas where implementation of the strategy had been minimal or tokenistic are taking real steps forward now. One problem with the Strategy is that a lot of the backroom work has been done in many areas but up front, positive action and new services are yet to emerge. This is beginning to change as the campaign brings people together and pressure to bear on local authorities.furness forum

Forum 28 hosted Barrow’s Push for Action event. The Mayor turned up with local media in tow and over a hundred new people signed up for the campaign. I could not attend as I was teaching that day. But I was heartened when one of our parents arrived in school sporting her Push for Action T shirt. Jenson was supposed to visit the school as well. But he got a better offer from Border Television News. Another time perhaps.

gerryLast I heard he was being met by Gerry Marsden of “Gerry and the Pacemakers“ fame after taking a “Ferry cross the Mersey” from Liverpool to events organized by Wirral Autistic Society.

Push for Action is a local campaign for local people that is having a national impact. Instead of the normal route of an advocacy organization like the NAS mobilizing its support to lobby government ministers and MPs, Push for Action has created genuine grassroots support for the campaign amongst people whose lives are not directly affected by autism. This popular support has a way of feeding into the political process that can be more effective than professional lobbying campaigns. As a result half of all MPs are aware of the campaign and over a third have come out in support. The government has agreed to a proper public consultation when it reviews the strategy next year. Local authorities are to be given stricter criteria for assessing compliance with the strategy. The government has agreed to collect local data on adults with autism for the first time and support the right to advocacy for vulnerable adults. Perhaps best of all, given that doctors in general practice are the gatekeepers and under new health service reforms, the commissioners for many services, The Royal College of General Practitioners has agreed to make autism a learning priority for GPs for the next three years.

So congratulations to Tom, Piers and Jenson. But most of all, thank you to all those people who give their time to build NAS branches and all the other organizations and individuals who have come together around the campaign to guarantee a better future for autistic adults.

The Ageing of Autism

 

BACKGROUND

When data from California emerged in 1999 that suggested a dramatic increase in the rate of autism it was taken by some advocates as evidence for an epidemic. This was problematic because the scientific consensus is that autism is fundamentally genetic and you cannot have a genetic epidemic. Therefore there had to be some other explanation for the Californian data. The authors stated that their data provided no evidence for or against the idea that autism was increasing. But if more people were entering the system the obvious conclusion was that autism was on the increase. One idea was that the genetic “bullet” required an environmental “trigger” and perhaps there were more triggers now than before. About this time two ideas were suggested concerning vaccines. In the UK the MMR vaccine was implicated in the now infamous Lancet paper by Andrew Wakefield. in the USA Thimerosal, a mercury based preservative commonly used in vaccines, but never used in live vaccines like MMR, was proposed as a possible source in an article in Medical Hypotheses.

Both these ideas were tested and found wanting by medical researchers. But thanks to the internet both ideas had already spread amongst parent advocacy groups. These groups were used to battling with unsympathetic government agencies both for recognition of their children’s needs and for resources to meet those needs. So official denials of the vaccine link were met with predictable cynicism. The media picked up on the controversy and presented it as a human interest story: brave maverick doctors and campaigning parents taking on an unfeeling system that denied its culpability for the epidemic and refused to meet its obligations.

THE HIDDEN HORDE

So the idea of an autism epidemic caused by vaccines went mainstream. Following the public disgrace of Wakefield the vaccine link may no longer resonate with the media or the general public but the idea of an epidemic has survived. Those of us who question the notion of an epidemic of recent origin are challenged to explain the lack of autistic adults. Where is this “Hidden Horde?” There remains a devoted band of true believers in the vaccine link who frequent the comments sections of blogs and other social media sites. They often pose the question thus. This is a recent comment on Emily Willingham’s blog.

That British study found all the missing adults by asking survey questions. I don’t want to hear about a 50 year old man who lives alone and would rather stay home and read a book than go to a party. I don’t want to hear about a retired bus driver with a wife and a family who just discovered he has Asperger’s.

What I want to see are lots of adults like so many children that I know personally. I want to see the 40, 50, and 60 year olds who flap their hands, don’t speak or who have echolalia or who scream endlessly. I want to see adults who rock and spin and line things up like our kids do, along with ones who bang their heads on the walls endlessly and are still in diapers. I want to see the adults who have to be watched constantly because they’ll wander off at will. And I especially want to see middle aged and elderly people that are now called autistic and whose health histories include starting off as normally developing babies, but who suddenly and dramatically lost learned skills and regressed into autism. Finally, I want to see older people with autism who also have the health problems our children do, namely, bowel disease, seizures, and sleep disorders, to name only a few.

Unless and until you can show us adults with classic autism like we see in our children, this proves nothing.

Anne Dachel, Media editor: Age of Autism

Dachel and those like her are either ignorant of the facts or are misrepresenting them.

  • Much of the increase in autism has been driven by changes in diagnostic criteria to include those whose cognitive and/or communication skills would have excluded them in the decades prior to the “epidemic.” I find it ironic that these same people are now complaining that fresh changes to the criteria will exclude more high functioning types and lead to the denial of services to people they have previously dismissed as not being truly autistic.
  • The children Dachel describes are not the norm, even amongst those with so-called “classic autism.” I say this based on my experience of teaching these children for thirty years in a school for children with severe learning difficulties in the UK.
  • A tiny minority remain non-verbal, prone to self harm and violent tantrums into adult life. But many more learn to talk, to manage their own behaviour and acquire sufficient self help skills to live with some independence in the community. I see these changes in children aged 2 to 19 years old.
  • It is reasonable to expect that progress to continue into adult life, especially for those without significant impairments in cognitive and communication skills.

THE HIDDEN DATA HOARD

There is a problem regarding those who do have significant impairments in cognitive and communication skills. We have very little data on autism through the life span for these individuals, especially the older generation who may have missed out on an autism diagnosis when educational subnormality (UK) and mental retardation (USA) were more commonly diagnosed in this population. That is why I am grateful to Cos Michael, Autism & Ageing Project Manager at the National Autistic Society  for alerting me to some American research entitled “Prevalence of selected clinical problems in older adults with autism and intellectual disability.”

The study compares adults with autism (ASD) and Intellectual disability (ID) to those with ID alone. They took two survey samples from consecutive years, 2009/10 and 2010/11. They excluded those individuals with profound ID for whom any differential diagnosis is problematic as well as those whose level of ID was unspecified. Thus we had a group of individuals whose diagnosis with either ID or ID and ASD together could be ascertained with a reasonable degree of confidence. The primary focus of the study was on medical and  behavioural problems in older adults with ASD. They found no significant difference between the ASD/ID group and the ID group regarding physical/medical disabilities including epilepsy, but a significant increase in behavioural problems in the ASD/ID group, especially destructive or self injurious behaviour. Because the cut off point was age 59 there was little data on the impact of those diseases of old age like Dementia on the autistic ID population.

I was also interested in another aspect of the study. What light could it throw on the prevalence of ASD amongst  individuals with ID? ID affects around 2% of the population. Here we had figures recording the proportion of those with ID who also had ASD over a period of thirty years. First some caveats. This is not epidemiological data, any more than the Californian DDS data was. These are surveys. The 2010/11 survey has a much smaller sample than the 2009/2010 survey. We have no idea how the exclusion of subjects with profound or unspecified ID affected the results because we have no indication of how many of them were autistic. The authors acknowledge that the lack of unique subject identifiers means that that may have been some overlap over time or across states. A few individuals may have been counted twice. They are also aware that the potential for under diagnosis in older individuals means that some in the ID only group may have had an undiagnosed ASD.

So this study is indicative rather than conclusive. Bearing this in mind the raw data still suggests that there is a significant adult population with ASD and ID that exceeds the figures suggested by early prevalence studies.

Table 1 Demographic variables among the ASD group and the ID-only group in the 2009 to 2010 NCI sample of adults aged 30-59 years (adapted from Kats et al. Journal of Neurodevelopmental Disorders 2013, 5:27)

Age ASD and ID(n = 438), number (%) ID-only(n = 4,551), number (%)
30 to 39 years 190 (43) 1,654 (36)
40 to 49 years 154 (35) 1,326 (29)
50 to 59 years 94 (21) 1,571 (35)

Table 2 Demographic variables among the ASD group and the ID-only group in the 2010 to 2011 NCI sample of adults aged 30-59 years (adapted from Kats et al. Journal of Neurodevelopmental Disorders 2013, 5:27)

Age ASD and ID(n = 298), number (%) ID-only(n = 3,963), number (%)
30 to 39 years 148 (50) 1,291 (33)
40 to 49 years 100 (34) 1,473 (37)
50 to 59 years 50 (17) 1,199 (30)

Leaving aside those aged 30 to 39 in 2009/10/11 who are most likely to have been exposed to whatever environmental factors are supposed to have triggered the “epidemic” in the last quarter of the 20th Century, the proportion of those with an ID who also have an ASD suggests a prevalence in the range of 11 to 15 in 10,000 amongst adults with ID born in the 1950s and 1960s.

This is greater than figure of 4.5 in 10,000 found by Lotter (1966) but more in line with Wing and Gould’s finding of a prevalence of 20 in 10,000 for a population of children in special education in the Camberwell study. (1979) Gillberg reported similar findings in Copenhagen (1986) for children with special needs. (References for all studies mentioned in this paragraph can be found here.)

Perhaps more startling is the fact that Emerson and Hatton (2004)  estimate that less than a quarter of people with ID in the UK are known to health and social care agencies. The rest are managing in the community with no support. Presumably some of those are autistic as well. This all goes to suggest that there are already more ageing autistic adults than we know about and we are ill equipped to understand their needs, let alone provide for a dignified passage through old age.

An Inflammatory Argument

sisyphusI am beginning to feel a real sympathy for Sisyphus, who was punished for his sins by the ancient Greek gods and condemned to roll a stone uphill for all eternity. Sisyphus’ sin was to imagine he could use trickery to outsmart the gods and cheat death. The punishment for his hubris was an eternal life of toil. My sin was to imagine that once you have *refuted* a stupid argument about autism you can move on and forget about it. Alas, no. The stupid, it burns. And when it’s not burning it smoulders. So, in the months since my last post, all manner of myths about autism have refused to die. Even the most unlikely embers can burst into flames. Then we have to have the argument all over again. We will never convince the true believers. But new people turn to the internet for information all the time and false information has to be challenged.

This happened with a recent story on the BBC website about the building of a new school for autistic children. The piece described how the building was being made autism friendly by accommodating the sensory needs of autistic children. It also discussed the reasons for creating fresh specialist provision at a time when the emphasis is on inclusion and  educating all children in the mainstream and briefly referred to possible reasons why more boys are diagnosed than girls, especially at the more able end of the spectrum. It was a very good article. It faced up to the disabling effects of autism without demonizing or scaremongering. At the same time it showed how society can lessen the impact of autism by making adjustments to meet people’s needs. This was achieved by designing an autism friendly school. Architects take note. Getting rid of harsh lighting and bright, shiny surfaces and replacing sharp corners with curves is not just autism friendly. It is people friendly.

When I turned to the comments section it had been closed. But not before a supportive and intelligent discussion had been hijacked by those who insist that vaccines cause autism. I am not going to tackle that particular canard right now. It will never go away. At least we have succeeded in limiting its scope and influence so it no longer attracts mainstream support. But tagged on to the end of the discussion another ember was rekindled, namely that there is an association between autism and acetaminophen (more commonly known as Paracetamol in the UK or Tylenol in the USA). This is a spin off from the vaccine myth that has its origins in the use of Paracetamol to treat localized irritation or fever, a common side effect of the MMR vaccine. So instead of the vaccine causing autism it is the medication taken after the vaccine!

I first encountered this hypothesis in an article by Schultz et al. in 2008. It was published in a respectable journal, Autism, that is supported by the National Autistic Society. But it is a weak article that drew this critical response. Schultz recruited parents from an online autism discussion group and asked those parents to recruit the controls from amongst their acquaintances. This was a recipe for massive selection bias. In addition the sample size was small. No child was examined. No diagnosis or case history was independently verified. Everything was done by parental questionnaire. I checked PubMed for any follow up. Schultz published two further articles in obscure journals. In one,  a five page discussion of the literature he offered the following.

The role of acetaminophen (paracetamol) in an increased risk for asthma is described and a possible similar link to an increased risk for autism is suggested.

Another five page discussion of the literature ends with this hypothesis.

The purpose of this report was to explore a possible correlation between acetaminophen and autism which acts through activation of the cannabinoid system. If this hypothesis is correct, it opens new avenues of investigation for possible autism treatment including
agonists and antagonists of the CB1 and CB2 receptors.

And finally, when he did join a serious study, using genetically modified, socially impaired mice, they found that acetaminophen actually improved sociability which is often impaired in autistic individuals who have difficulties with social understanding.

Hence, it appears that other indirect actions of acetaminophen, including 5-HT receptor agonism, may underlie its sociability promoting properties outweighing any CB(1) mediated suppression by locally-elevated endocannabinoids in these mice.

So there we have it. A very tenuous link between paracetamol and autism was suggested five years ago. Two years later a possible biological pathway via activation of the cannabinoid system was proposed. But when this hypothesis was tested last year the benefits of paracetamol were deemed to outweigh the remote possibility that it might be connected to autism.

However, it was the original study that made the news. It had power in the public mind because it was about parents telling their story. It was easy to understand and easy to believe. So, five years later, it is still making the rounds, even though there is no science to support it and what evidence there is actually contradicts it.

* I use the word “refute” in the old sense of providing compelling evidence against an argument and not the weaker modern sense where “refute” is used as a synonym for “deny”.*

 

MMR and Autism

Measles graphicThe continuing outbreak of measles in South Wales has once more drawn attention to Andrew Wakefield, the man who did more than most to create a panic over MMR and autism. He was aided and abetted by scare stories in the media which presented Wakefield as a lone hero, battling against an establishment cover up on behalf of the children. Many of those now affected missed out on vaccines because of this scare. According to Dr Roland Napier, consultant epidemiologist for Public Health Wales, speaking to the Daily Telegraph

”There was a sustained campaign against MMR by the local evening paper [the South Wales Evening Post in the late Nineties] and my colleagues noted at the time that its circulation area had a proportionate fall in vaccinations compared to other regions in Wales. So there is a connection,”

This time round the media are united in condemning Wakefield while failing to acknowledge or apologize for their part in promoting the MMR Hoax. But if you look in the comments section of the online articles you will find a small but determined minority of people who still believe the lies and distortions so faithfully repeated by the media in the past. Andrew Wakefield himself has summarized these for us in a statement published on Age of Autism.

Blame the Government.

Wakefield’s argument then and now is that the government was to blame for withdrawing single vaccines and taking away choice after he raised doubts about MMR and recommended single vaccines. This ignores the fact that prior to MMR there had never been a single vaccine for mumps in the UK. Furthermore, replacing the two MMR doses with six separate doses one year apart would have left more children unprotected for longer, even assuming that vaccine take up did not suffer from six doctors visits instead of two. All the evidence suggests that uptake is lower for single doses and children often do not complete the course. And Wakefield has never addressed the question of how, if any component parts of the MMR vaccine are implicated in autism or bowel disease, giving them separately would mitigate that risk.

MMR is not safe

Two versions of MMR vaccine were withdrawn because the mumps component based on the Urabe strain carried a risk of developing aseptic meningitis. This was known before they were introduced but the rate of infection, 1 in 100,000 was much less than the natural rate of infection from mumps itself. They were only withdrawn in favour of vaccines using the Jeryl Lynn strain of mumps, which does not cause aseptic meningitis, when a more intensive study found a rate of 1 in 3000 for aseptic meningitis among children following MMR vaccination in Nottingham. Even then if the Jeryl Lynn strain had not been available, the health authorities would have continued with the vaccine because the rate of aseptic meningitis in actual mumps is around 1 in every 10 cases.

But Wakefield’s target has always been the measles component of MMR, not mumps or rubella. According to official statistics in the 20 years prior to the introduction of MMR there were 436 recorded deaths from measles in England and Wales. In 1988, the year MMR was introduced, there were 16 deaths. In the next twenty years there were 28 recorded deaths in England and Wales. Apart from death, there is the misery of the disease itself and the risk of side effects like convulsions (1 in 200:  MMR 1 in 1000), meningitis/encephalitis (1 in 5000: MMR 1 in 1000000 ), bleeding disorders (1 in 3000: MMR 1 in 100000). These figures reflect the safety of MMR based on 500 million doses given worldwide over a thirty year period.

MMR can cause autism

Wakefield bases this assertion on the decision by the US Vaccine Court to award damages to a small number of “children whose autism followed vaccine-induced brain damage. A recent government concession in the US Vaccine Court confirms that the parents’ claims were valid all along.”

He does not mention the Autism Omnibus Proceedings at the same court. A team of lawyers recruited thousands of parents who believed that vaccines had caused their child’s autism. They selected their strongest cases to present three general causation theories of autism resulting from either MMR, Thimerosal containing vaccines, or a combination of the two. Expert witnesses were summoned on both sides. Surprisingly Andrew Wakefield was not called as an expert by the petitioners. Every case was lost and the theories were dismissed. The successful individual petitioners mentioned by Wakefield have never argued that vaccines cause autism. That case was lost. They followed a different path. The vaccine court includes a list of table injuries that cover recognized side effects like encephalitis. You do not have to prove that the vaccine caused these injuries, only that they occurred within a specified timescale after the vaccine was administered. Some parents have persuaded the court that a) the injury occurred within the necessary timescale and b) their child is permanently disabled as a result. Hence the generous compensation payments.

But this does not prove that vaccines cause autism. According to Wikipedia

From 1988 until March 3, 2011, 5,636 claims relating to autism, and 8,119 non-autism claims, were made to the VICP. 2,620 of these claims, one autism-related, were compensated, with 4,463 non-autism and 814 autism claims dismissed; awards (including attorney’s fees) totaled over $2 billion. The VICP also applies to claims for injuries suffered before 1988; there were 4,264 of these claims of which 1,189 were compensated with awards totaling $903 million.[9]

Taking a prevalence figure for autism of 1 per cent in the general population we would expect a similar proportion among children winning claims for vaccine injury. So twenty or thirty individual cases of autistic children winning their claims would not be unusual. It is not evidence that vaccines cause autism any more than the “814 autism claims dismissed” are evidence vaccines do not cause autism. The evidence is in the science and we now have 15 years of accumulated evidence that does not support the vaccine autism hypothesis.

Wakefield ends by offering “to debate any serious challenger on MMR vaccine safety and the role of MMR in autism, live, in public, and televised.”  That is how politicians operate not scientists. Science proceeds via research, publication and academic discourse. In all these arenas Wakefield’s ideas have been tested and found wanting. Giving him the opportunity to grandstand on television may help to rally the faithful. It will add nothing to our understanding of vaccines or autism.

The Good and Bad Science of Autism

 

Here is a press release from Autism West Midlands, a charity that provides autism services and support in the UK. The book is available as a free download but I hope that once you have read it you will, like me, visit their shop to purchase a hard copy.

Autism West Midlands has published a pioneering book about autism research to be released on World Autism Awareness Day, 2nd April 2013. The Good and Bad Science of Autism is an easy-to-use book designed to introduce the reader to autism research.

Written by geneticist Dr. Neil Walsh and neuroscientist Dr. Elisabeth Hurley, the book brings together scientific research from multiple disciplines including neuroscience, genetics and psychology. It examines the validity of different areas of autism research and helps the reader to draw conclusions about the current scientific knowledge of autism.

The book begins by providing a basic introduction to scientific method: how scientific studies should be undertaken and published. It then goes on to cover good autism science research before exploring how bad science has affected autism research and how the age of the internet has affected the public understanding of autism.

This book discusses topics such as autism and the MMR vaccine, the search for tests to diagnose autism and some of the interventions available for people with autism. The book gives readers guidance on how to differentiate between good and bad science and how to interpret recent autism research findings.

This exciting book is designed to be easily accessible. Thanks to its colour-coded pages, readers can choose to read either a summary of the chapter or the full text. There are also pages focusing on particular aspects of autism research.

Finally, the book provides a list of useful resources that readers can access to find out more about autism science research.

Dr. Elisabeth Hurley, co-author of the book said “The Good and Bad Science of Autism is an easy-to-read book that we hope will introduce autism research and the science behind it to a wider audience.”

Jonathan Shephard, Chief Executive of Autism West Midlands said “Autism has multiple causes and complex effects. Understanding autism is therefore not an easy task in a world where people look for simple, immediate answers. The Good and Bad Science of Autism meets the need for an easy to follow path through the fascinating and developing strands of autism research. There are no simple answers in autism, but the book provides a clear explanation of current autism knowledge.”

There is nothing new in this booklet. But it provides a concise and accessible summary of the limits of our current knowledge as well as a guide to understanding scientific research for the lay reader. It is very good at defending research from bad science reporting but misses a trick by failing to point out that the misreporting of research often arises, not from a misreading of the research, but from the sensationalism of the press releases that are issued by the research institutions themselves.

The chapters on bad science and alternative therapies would have been more useful if the authors had named names. Perhaps the UK’s litigant friendly libel laws persuaded them to exercise due caution. They do reference Ben Goldacre’s Bad Science and Paul Offit’s book, Autism’s False Prophets, which does name names, and they acknowledge the journalistic achievements of Brian Deer in relation to MMR. But I was surprised that there was no mention of Mike Fitzpatrick who has authored two excellent books, MMR and Autism What Parents Need to Know and Defeating Autism, a Damaging Delusion on alternative therapies. Their discussion of alternative therapies also omitted some of the more pernicious ones, hopefully because they have yet to gain traction in the UK. So no mention of Lupron, DIY stem cell therapy, bleach enemas or faecal transplants.

The authors are on stronger ground when explaining their own specialities’ contribution to autism research. The chapters on genetics and neurology are so straightforward that even I understood them. The comprehensive references (that are a feature of every chapter) point the reader to some of the most influential research in each area for those who feel emboldened to expand their knowledge and expertize.

The booklet ends with a list of resources including blogs which the authors recommend as often providing more reliable reporting on autism research than the mainstream media. I was delighted to see LBRB, Science Blogs and Neurologica all recommended. I would add Science Based Medicine and Neurodiversity to that list. Now I have to check out the other two blogs they recommend, Cracking the Enigma and BishopBlog.

Like many parents, I started out on my journey through autism with an open mind to the many alternative theories out there and a tendency to close my mind to the official line that reeked of establishment cover up and complacency. Sixteen years later I have learned to distinguish the political establishment  that often does fail to deliver and always tries to cover its back, from the scientific world that does have a track record of serious research and owning up to its mistakes. I would have learned this a lot sooner with a booklet like this to guide me.

World Autism Awareness Day

Logo of World Autism Awareness Day, figures holding hands around a globe

World Autism Awareness Day is marked on Tuesday April 2. It was established in 2007 by United Nations Resolution 62/139.

According to Autism Speaks:

This UN resolution declares WAAD as one of only four official health-specific United Nations Days and will bring the world’s attention to autism, a pervasive disorder that affects tens of millions. The World Autism Awareness Day resolution encourages all Member States to take measures to raise awareness about autism throughout society and to encourage early diagnosis and early intervention. It further expresses deep concern at the prevalence and high rate of autism in children in all regions of the world and the consequent developmental challenges.

Raising awareness is fine and the National Autistic Society has a full programme on the day including a live webchat with Chief Executive, Mark Lever and a special Autism supplement in the Independent newspaper. The NAS also points out that raising awareness matters because

a lot of myths still surround the condition. These misconceptions can have a damaging effect on the lives of people living with autism, making it more difficult to have their condition recognised and to access the support they need.

One of those myths, perpetuated by narratives like the one above from Autism Speaks and the wording of the UN Resolution is that autism is primarily a problem of childhood. Early diagnosis and early intervention are indeed often associated with positive outcomes. But what about adults? If you missed out on the early stuff does that mean it is too late for you? Autism Speaks has another narrative for that.

World Autism Awareness Day shines a bright light on autism as a growing global health crisis. WAAD activities help to increase and develop world knowledge of the autism epidemic and impart information regarding the importance of early diagnosis and early intervention. Additionally, WAAD celebrates the unique talents and skills of persons with autism and is a day when individuals with autism are warmly welcomed and embraced in community events around the globe.

The key words here are growing global health crisis and autism epidemic. The recorded prevalence for autism has grown dramatically in the last twenty years. The generally accepted figure today is 1 in 100 or 100 in 10000. I take this as a vindication of the pioneering work of Wing and Gould(1979) in establishing a prevalence of approximately 20 in 10000 for autism and related conditions in a special school population in Camberwell, Middlesex in the early 1970s together with the work of Ehlers and Gillberg (1993), who established a prevalence of approximately 70 in 10000 for Aspergers and related conditions in mainstream education in Gothenburg. These studies are referenced in a discussion document on prevalence on the NAS website. Probably the best explanation of the growth in numbers is the redefinition of autism as a broad spectrum condition affecting individuals of all levels of cognitive functioning instead of a narrowly defined disorder. Pressure from parents and, latterly, self advocacy by autistic adults has also helped to push autism up the agenda and modern epidemiological studies using the latest diagnostic criteria have revised the figures upwards from the 5 in 10000 of the early studies in the 1960s.

Autism Speaks, along with a number of parent advocacy groups, primarily in the United States but with representatives in many countries around the world, argues that the growth in numbers cannot be explained by increased awareness, improved methods of ascertainment and the broadening of diagnostic criteria. Instead we are presented with the narrative of an epidemic. And as twenty years is too brief a time-span for a genetic epidemic there must be an environmental cause. Or causes. At one time vaccines were in the dock. In the UK MMR was identified in studies that were at best inept and at worst fraudulent. In the USA thimerosal was indicted. The evidence for these claims has been  refuted yet again but campaigners insist that there must be something or some things, in vaccines, in the atmosphere, in food or household chemicals or maybe an unspecified combination of them all contributing to the so-called epidemic.

This is bad for three reasons. Firstly, quack doctors continue to prey on parents and persuade them to subject their children to costly and potentially harmful treatments that have no basis in science.  Secondly, the rhetoric of the epidemic has created a fear of a coming deluge of severely disabled autistic adults who will swamp health and care services. These fears have been fuelled by coverage of a recent survey purporting to show that one in fifty children in the USA are autistic. Emily Willingham makes the important point in her discussion of this story that much of the increase is in teenage children, predominantly boys, in mainstream schools.  They are emerging as autistic now, not because of environmental toxins, but because factors now at work in their social environment make their autism more obvious. If you are a reasonably intelligent autistic child you can learn to get by unnoticed by imitating your peers and learning the rules. Then all the rules change in adolescence. No one tells you they have changed and you are busted. Plus you are changing as well. Teenage years are difficult for everyone. Imagine trying to navigate your way through adolescence with the added impairment in social understanding that features in autism.

But most autistic teens do get through it and can become contributing members of adult society if society is prepared to make the necessary adjustments and accommodations to meet their needs. This is  happening in the world of physical disability with technical advances in the design of wheelchairs and other prosthetic devices alongside a social revolution in attitudes and a willingness to spend money on lifts, ramps and other means to make our public spaces and workplaces accessible to all.

But there is a third and potentially more damaging consequence of rhetoric like that employed by Autism Speaks. If autism is presented as a new and growing threat, the many autistic adults who already exist and are struggling with needs that are unrecognized and unmet will, in the words of a previous NAS campaign, continue to be ignored or ineligible. While research funds concentrate on finding causes and cures in order to head off a tragedy fabricated out of fear and uncertainty,  the certain tragedy of adult lives mired not because they are different but because we are indifferent will continue.

In my private life as the parent of an adult autistic son, in my professional life as a teacher in special education and in my public life with the National Autistic Society I am well aware that autism does bring enormous problems. But these are compounded by misinformation, misunderstanding and the missing resources that could make all our lives so much easier. If Autism Speaks really wants World Autism Awareness Day to be an occasion to celebrate the unique talents and skills of persons with autism and [be] a day when individuals with autism are warmly welcomed and embraced in community  they should spend less time scaremongering about autism and pay more attention to what autistic people and their allies are saying. Autism Listens perhaps?

Adam Lanza: scapegoating is not the answer

My thanks to Michael Baron for this PRESS RELEASE from Autism-Europe.

18 December 2012
Caution over linking autism with school massacre in United States

Numerous media reports have claimed that, Adam Lanza, the young man who killed 20 children 6 adults at an elementary school in the United States on Friday, had Asperger syndrome.

While claims that Lanza had Asperger syndrome (an autism spectrum disorder) remain unverified at this point in time, Autism-Europe urges the wider community to be cautious about making links between autism and violent crime.

On this tragically sad occasion, Autism-Europe’s Director, Aurélie Baranger, expresses “our deepest sympathies for the victims of the massacre at Sandhook Elementary School, their families and the community of Newtown, Connecticut”.

Ms Baranger explains that, “We should understand this tragedy as the act of an individual, not typical of a person with autism.”

“We urge the international community, including journalists and other individuals, to avoid making incorrect assumptions or judgements about people with autism,” she continues.

“As with the rest of society, the vast majority of people who have autism are law-abiding citizens.”

“People with autism throughout Europe, the United States and the rest of the world, already face many barriers and much discrimination. Additional negative stereotyping in the media only leads to further stigmatisation and difficulties for people who have autism.”

“When writing media reports, we urge journalists in particular to take appropriate care to avoid further stigmatising people who have autism,” she continues.

Autism affects around 1 in 150 people in Europe. It is a lifelong disability that affects the development and functioning of the brain. People who have autism experience difficulty with communication, social interaction and often display restricted interests and repetitive behaviours. Autism is a spectrum disorder, which means that the symptoms vary between individuals, ranging from mild to severe.

For more information about autism, please visit: www.autismeurope.org

For more information, and or interviews, please do not hesitate to contact

Aurelie Baranger, Director of Autism-Europe:

Tel: +32 (0)477 70 59 34

Email: aurelie.baranger@autism-europe.org

The media has generally has acquitted itself well in covering the school massacre in Newtown, Connecticut, except in one respect. Faced with the inexplicable horror of a massacre of young children, an explanation has been sought by trying to typecast the perpetrator.

From all accounts it is reasonable to assume that Adam Lanza was shy, intelligent, vulnerable, socially isolated, a “nerd” in common parlance. But it is unreasonable to label him a “Nerd Killer” as one UK tabloid did. Language is important. Calling him a “Child Killer” would have left no doubt about what he did. “Nerd Killer” is a statement about who he was. It suggests that going on a killing spree is a nerd characteristic.The grammatically correct “nerdy killer” is less strong. It does not make nerds seem threatening or dangerous. Instead it suggests that this was an uncharacteristic act.

Similarly, the references to Lanza’s interest in computer games, violent of course, are supposed to mark him out as a potential mass murderer. But a month ago the media were all over the launch of Black Ops II with pictures of happy smiling fans some of whom had obsessively queued for days. Others were in fancy dress as blood smeared zombies. All good fun and generating millions of sales but apparently not millions of deranged killers.

Back to autism, and Lanza certainly looks a good fit for a diagnosis. This has yet to be confirmed. Actually most of the “facts” about Lanza have turned out to be false according to the Guardian. If it turns out to be true does it matter? Not very much. In my opinion, if he had survived to stand trial it should have had no bearing on his guilt and no bearing on his sentence. But it should have been taken into account to ensure that his condition did not disadvantage him in exercising his legal right to a fair trial. And it should have been a mitigating factor in deciding the appropriate custodial regime for such a vulnerable adult. That and no more.

It has even been suggested that Lanza was a Goth. Never mind that he is as unlike a Goth as it is possible to be, Goths, like nerds, obsessive computer gamers and autistic people are more likely to be the victims rather than the perpetrators of violence.

In there eagerness to explain the inexplicable sections of the media have focused on identifiable sub cultures and categories of people in society. see for example the lurid profile of Lanza in the Sun. None of this helps to explain why Adam Lanza acted the way he did. But it does increase the likelihood of bullying and violence against these disparate elements in society. This irresponsible behaviour may inadvertently add to the list of Lanza’s victims.

So why did he do it? I do not know. But I predict that if there is an answer it will emerge from a complex analysis of the circumstances of his life and not from simplistic profiling by  journalists that puts others at risk of retaliatory hate crimes.

A comprehensive list of autism related blogs and responses is available here:

http://lizditz.typepad.com/i_speak_of_dreams/2012/12/gun-violence-and-the-search-for-a-scapegoat-autism-edition.html