Author Archives: Mike

Dr Lorna Wing, OBE 1928 – 2014

I learned today that Dr Lorna Wing died on Friday. Her contribution to our understanding of autism is unsurpassed. I think it was Dr Ekkehart Staufenberg, speaking at a National Autistic Society conference on Extreme Behaviours within ASD in June 2004 who remarked that if we examined every original and productive idea in the field of autism we would find that Lorna Wing mentioned it first. Or perhaps I heard it the following year at the inaugural NAS International Conference, which was introduced by Lorna Wing. Her opening address is available online. It ended with this prescient nod in the direction of the new diagnostic criteria for autism in DSM-V. I hope that ICD-11 will not be far behind.

The present sections in ICD-10 and DSM-IV on pervasive developmental disorders with their illogical mix of criteria should be thrown out of the window. They should be replaced by a sensible system based on a dimensional rather than a categorical view of autism and other developmental disorders. Each person’s profile of skills and disabilities is far more informative than saying they have Asperger’s syndrome, PDD NOS or any other subgroup in DSM-IV or ICD-10.

I never met Lorna Wing. But like many parents I felt I knew her via her book, originally published in 1971, The Autistic Spectrum. Her academic rigour and accessible style combine to make this one of the few books that can justify its subtitle as “A Guide for Parents and Professionals.” This is probably down to the fact that Dr Wing was herself, both a parent and a professional. Her daughter, Susie (1956 – 2005) was diagnosed with autism when she was three at a time when the cruel notion that bad parenting caused autism was the height of orthodoxy. Adam Feinstein, in an excellent chapter in his History of Autism, “The 1960’s; the parents fight back” describes the role of Lorna and her husband, John, both trained psychiatrists, in helping to establish autism as a neurological condition and not a psychiatric disorder. From the very start rigorous research was allied to parent advocacy for their children. Feinstein quotes from Lorna Wing’s personal memoir of the time.

Up to the end of the 1950s, the general public was profoundly ignorant concerning autism and the same was true of most professionals, even psychiatrists and psychologists. Among the few who were interested and aware, many agreed with the theory that the children were potentially normal but had been made to withdraw by cold, distant and overintellectual parents. Diagnosis was difficult or impossible to obtain and there was no help or support for the parents. Children could be excluded from education in school if they had severe learning difficulties or disruptive behaviour and there were virtually no special schools for children with autism.

According to Lorna Wing two things combined to overturn this state of affairs.

One was the development of objective, scientific investigation into autistic disorders, which showed that children had real disabilities underlying their unusual pattern of behaviour. The approach of the pioneers in research was very different from the armchair theorizing that had gone before. The other was the creation of the National Autistic Society [in the UK].

Lorna Wing played a central role in autism research and in setting up the NAS. At that time it was all about parents and children. And following from Kanner’s pioneering work, the children were seen to have a very rare and disabling condition. But Lorna Wing, in partnership with Dr Judith Gould pioneered the concept of an autistic spectrum in which varying degrees of impairment rather an absolute absence of social recipricocity was key to understanding autism. Their finding were published in the landmark Camberwell Study in 1979, which suggested a fourfold increase in prevalence for autistic spectrum disorders of 20 in 10000 when compared to the 5 in 10000 figure for the narrow definition of Kanner’s autism.

Even under this broad definition most children with autism were still severely impaired and most were found within the special education system. But if, as Wing and Gould have consistently argued, autism is fundamentally a disorder of social cognition what about children of normal or above average intelligence with a similar impairment? Do they have a place on the autistic spectrum. Clinicians in continental Europe  who were familiar with the work of Hans Asperger would answer yes. But Asperger’s work was largely unknown in the English speaking world until Lorna Wing published Asperger syndrome: a clinical account in 1981. She also contributed a chapter to Uta Frith’s book, Autism and Asperger Syndrome (1991) which contained the first published English translation of Asperger’s original paper.

So, over the course of thirty years, Lorna Wing was instrumental in countering the “refrigerator mother” theory of autism. She brought it into the mainstream as a developmental disorder which encompassed the full range of intellectual ability and brought the work of Hans Asperger to the attention of the Anglophone scientific community.

Lorna Wing has also been connected to the other great change in our thinking about autism, that for some people its positive aspects may outweigh the disability. A profile published in 2011 in the Guardian quotes her thus.

Another change has been a focus on the positive elements of autism; a kind of autism pride. “I do believe you need autistic traits for real success in science and the arts, and I am fascinated by the behaviours and personalities of musicians and scientists,” says Wing. She also believes that most of us have some autistic traits. “One of my favourite sayings is that nature never draws a line without smudging it. You cannot separate into those ‘with’ and ‘without’ traits as they are so scattered.”

Lorna Wing was never “either/or.” For her autism remained a complex and fascinating area of study in which the needs of the more able and the less able were acknowledged. This has particular poignancy in relation to her daughter Susie, who was one of those more disabled. The same Guardian profile ends with an account of Susie’s death.

“We were devastated. We were so close to her,” says Wing. “She couldn’t express her emotions but when you came home, her face would light up. That was absolutely wonderful.”

Lorna Wing leaves us a massive legacy embodied in her writings and in the Lorna Wing Centre for Autism. This is a diagnostic centre which pioneered the taking of developmental histories from parents alongside the clinical assessment of children and adults with autism. My son was diagnosed there. Most important for me, considering the horrors that have been inflicted on autistic people and their families in the name of science, is that Lorna Wing showed us how to combine academic rigour and fidelity to the scientific method with a deep humanity. She will be missed.

Autism, serial killers and mass murderers

A recent literature review by Doctor Clare Allely, at the University of Glasgow has been attracting a lot media attention. According to Google News there are press reports in Britain, Europe, America and China, with more to come no doubt.

The Washington Post proclaims a  “Significant’ statistical link between mass murder and autism, brain injury” in its headline. The Daily Mail has “Recipe for a serial killer? Childhood abuse, autism and head injuries are more common in murderers, study claims.”

In contrast, the paper itself, Neurodevelopmental and psychosocial risk factors in serial killers and mass murderers and the accompanying press release from Glasgow University are a model of academic restraint. Dr Allely is quoted as saying

“It is crucial to note that we are not trying to suggest that individuals with ASD or previous head trauma are more likely to be serial killers or commit serious crime. Rather we are suggesting that there may be a subgroup of individuals within these groups who may be more likely to commit serious crimes when exposed to certain psychosocial stressors.

“Research on mass and serial killing is still very much in its infancy. New research is urgently required to understand the mechanisms underlying these extreme forms of violence so that preventative strategies can be developed. We would recommend that in future, all serial or mass killers who are apprehended should be thoroughly assessed using standardised tools for investigating neurodevelopmental disorders including ASD and head injury.”

From the paper’s abstract:

“Our findings tentatively indicate that these extreme forms of violence may be a result of a highly complex interaction of biological, psychological and sociological factors and that, potentially, a significant proportion of mass or serial killers may have had neurodevelopmental disorders such as autism spectrum disorder or head injury. Research into multiple and serial murders is in its infancy: there is a lack of rigorous studies and most of the literature is anecdotal and speculative.”

Unfortunately, however nuanced the language, it cannot hide the fact that this paper is seriously flawed.

Others have commented on the flawed methodology, the over reliance on the internet, books and news reports as sources of data because there are so few peer reviewed studies to call on. (See for example John Elder Robison) Then there is the conflation of serial killers and spree killers, two distinct categories with different psychological profiles. Most striking is that the serial killer takes care to select their victims and tries to evade detection. The spree killer ‘selects’ victims at random and their killing spree is usually the prelude to suicide. They make no plans to avoid detection. These two categories appear to have been chosen because the perpetrators are mass murderers who have each killed at least three people. Other murderers were excluded from the analysis. If we assume for the moment that data was reliably collected this was a missed opportunity to ascertain whether autistic people are over represented in all murder statistics and not just mass murders.

But was the data reliably collected? The headline figure is that 67 out of 239 mass murderers were autistic (28.03%). But only six of these had “a definite diagnosis of ASD.” Twenty one were “highly suspected” of being autistic and thirty three were “possible/probable” autistics. Hang on. Do the math. 6+21+33=60. So what about the other seven? This is a really basic error. It should have been corrected during editing but it was not. The authors also state that all foreign language (non English) documents were excluded from their search and then go on to quote a Norwegian language website as the primary evidence for three of their ”definite” autistics, when, in fact, it only reports that Anders Breivik, the Norwegian mass murderer, might be autistic.

So what about these six definite diagnoses of autism?

Martin Bryant went on a killing spree in Australia in 1996. He had learning difficulties and may have had autistic traits. But a diagnosis of Asperger Syndrome was ruled out by a forensic psychiatrist hired by his defence lawyers. My thanks to Paula C. Durbin-Westby  for the link to the full psychiatric assessment. Having read it I think that he may have met modern criteria for ASD. But we will never know and I do not understand the basis on which Allely et al. assign Bryant a “definite diagnosis.”

Robert Napper is a serial killer and rapist who was detained indefinitely at Broadmoor, a UK facility for the criminally insane, in 2008. Napper is a paranoid schizophrenic who witnessed his father physically abusing his mother until their divorce when he was ten. He was sexually assaulted when he was thirteen by a family friend and underwent a personality change. He was diagnosed with Asperger Syndrome after his arrest. Allely et al. rely on Murderpedia.org for this information.

Wolfgang  Zaugg is referenced to the Norwegian language website, dagbladett.no which does not refer to him at all. A Google search found an entry on Murderpedia which reveals him as an immigrant to Sweden who experienced racism as a child. As an adult he became a Swedish citizen and an accomplished businessman. When his business collapsed and he could not pay his gambling debts he financed his lifestyle through  bank robberies.  He was involved with far right terrorists and embarked on a killing campaign against other immigrants, perhaps to prove his Swedishness. There is no mention of autism.

Nicky Reilly is also referenced to the Norwegian language website, dagbladett.no which does not refer to him at all. He is autistic. He has a diagnosis of Asperger’s Syndrome.  But he never killed anybody. He converted to Islam and was recruited as a suicide bomber by extremists who exploited his autism. The only person hurt in his suicide bomb attempt was himself. Nicky survived and is serving an eighteen year sentence for terrorism. Even if he had been successful he is not your typical serial killer or spree killer.

Ragnar Nilsson is also referenced to the Norwegian language website, dagbladett.no which does not refer to him at all. There is no English reference to him in Google searches. My limited Swedish leads me to suspect that he is the triple murderer in this story.

Cary Stayner claims he was sexually abused by an uncle when was eleven. This was when his brother was abducted by a paedophile and kept a prisoner for seven years. Cary was diagnosed with OCD, psychotic disorder and schizophrenia following his arrest for the murder of four women. According to Murderpedia there was a history of mental illness and sexual abuse in the family. But no mention of autism.

These are the six “definite diagnoses of autism.” We can rely on two, maybe three of the diagnoses. What about the cases where “ASD was highly suspected?” Top of the list is Seung-Hui Cho, who carried out the Virginia Tech massacre in 2007. Lee, Lee, and Ng (2007), the best resource listed for Cho regards any diagnosis as “speculative.”

“So we ask if he met criteria for a diagnosis based on Diagnostic and Statistical Manual of Mental Disorders-IV (DSM-IV) or International Classification of Disease-10 (ICD-10)? Or was he of a criminal antisocial or psychopathic mind? Unfortunately without having interviewed him or having access to his records, we cannot say for sure. We could speculate that he was depressed with delusional thoughts, and perhaps had undiagnosed Asperger's disorder (a mild variant of autism), or was taking illicit substances. But we do not have enough evidence to be certain of a definitive psychiatric condition that could account for his extremely violent behaviour.”

Jeffrey Dahmer is also included. He even gets his own case study. Yet Dahmer was subject to rigorous forensic psychiatric assessment that failed entirely to mention any putative autistic diagnosis. As Emily Willingham points out.

“According to mental health professionals who personally diagnosed serial killer Jeffrey Dahmer, he had a personality disorder. That didn’t stop the authors of a recent paper attempting to link autism and mass murderers, serial killers, and other homicidal maniacs from listing Dahmer as “highly suspected” of having an autism spectrum disorder, along with 61 other people who were never diagnosed with one, including Timothy McVeigh, Terry Nichols, and Dylan Klebold.”

Let us call a halt. If only two out of six ”definite diagnoses” can be confirmed what chance is there that any of the probable or possible diagnoses will stand up to scrutiny? There are compelling factors to do with family histories of abuse and mental illness that are sufficient to explain why these people became mass murderers without recourse to a retrospective diagnosis of autism.

I am also curious as to why the authors examined head injury in tandem with autism. Autism is neurodevelopmental. It is a result of atypical brain development in utero caused by an, as yet unknown, complex set of interactions between genes and environment. These create a predisposition to certain kinds of behaviour in which some of the determining parameters are intelligence and language development. The ameliorating factors include early identification and the quality of early intervention. Brain injury usually results from brute force trauma later in life. It can undo or delay development. But its relation to autism is never explained by the authors.

In conclusion, the authors found two definite cases of autism in 239 cases of mass murder. This is consistent with the rate of autism in the general population. For some reason they included another fifty eight possible cases that do not stand up to scrutiny. Then they get the maths wrong and proclaim their sixty as sixty seven. And from this we are led to the conclusion that there is a possible subset of autistic people who, given the right amount of psycho-social stressors might turn out to become mass murderers, So we should test all future mass murderers for autism, as the authors suggest, in the hope of identifying this subset and curing them? And should we be curing them of autism or of the propensity to become mass murderers? If so, how?

Having read more than I ever wanted to about serial killers and mass murderers in preparing this blog post I would suggest a simpler solution. Let us work together to reduce the number of children who are bullied and abused, especially those who suffer because their neurological difference is misunderstood. In this way we will increase the sum of human happiness and decrease the likelihood of future serial killers and mass murderers, whatever their neurology.

Is Andrew Wakefield a fraud and a bully?

I had hoped that, after he disappeared into obscurity in the United States, I could safely ignore Andrew Wakefield, the disgraced former surgeon, who lost his licence to practise medicine in the UK for his dishonest and unethical role in the MMR Hoax. He did surface last year alongside Polly Tommey, who followed her hero into exile in the USA, when they tried to sell an autism reality show. The premise was simple. Film autistic children in distress. Take them to Arthur Krigsman to be given a colonoscopy and diagnosed with autistic enterocolitis. Then cure them with special diets and supplements and film the happy outcome.

This project never came to fruition. But Wakefield and Tommey did intervene in the case of Alex Spourdalakis. They filmed this young man in distressing circumstances in hospital. They made allegations about the treatment he received, relying on the patient confidentiality enshrined in US law to prevent health authorities from responding to their claims. They had a willing accomplice in Alex’s mother and arranged for Alex to be treated by Arthur Krigsman. But refusing conventional treatment and opting for quack remedies did not have the desired effect. Alex was subsequently murdered poisoned and stabbed to death by his mother. We await the outcome of her trial. Both Wakefield and Tommey were complicit in attempts to use their film to justify her crime.

Wakefield’s most recent exploit pales in comparison to that example of sleaze. It seems that he has taken exception to being called a fraud. Actually he has been called a fraud many times, most noticeably by Brian Deer and Fiona Godlee in the British Medical Journal. He tried to sue them but a Texas court rejected his claim and the appeal has yet to be settled. Time Magazine reported that Wakefield was a fraud. So did CNN, The Daily Telegraph. David Whelan, writing for Forbes Magazine even suggested that the US authorities should deport Wakefield to face fraud charges in the UK. With the exception of his outstanding appeal with regard to the BMJ Wakefield has not responded to any of these reports until now when Emily Willingham, also writing for Forbes Magazine called him a fraud.

Actually Ms Willingham did not make a big deal about the fraud. Her main point was to highlight a recent review of gut issues and autism in Pediatrics which suggests that

It is clear that greater clinical and research scrutiny is needed to increase awareness on this topic and thus support development of the best standards of care. Previous controversy surrounding the MMR vaccine and proposed causal link between ASD and infection of the GI tract probably deterred investigators from dedicating resources to examine GI functioning in this population while fostering uncertainty in the ASD community regarding the validity of this line of inquiry.

This seems perfectly clear to me. Wakefield’s fraudulent research has tainted the investigation of potential links between autism and GI functioning. He has discouraged other investigators into this link and made it difficult for them to obtain funding. He has performed a great disservice to science. More importantly, autistic people with genuine GI dysfunction have struggled to have their symptoms taken seriously. They or their parents have had their concerns dismissed by health professional who are chary of any association with Wakefield’s ideas. It is a bitter irony that some are then welcomed by Wakefield’s acolytes into the alt-med world of untested and unproven biomedical remedies for autism.

Wakefield has written a  letter to Ms Willingham threatening her and Forbes Magazine with prosecution, “pending legal advice.”  He concludes

You are also advised that I live and work in Austin, Texas where my business is headquartered, and that my work is conducted throughout the US. Your defamatory statements about me will undoubtedly cause me to suffer significant personal and financial damage.

My lawyers are currently dealing with Deer and his co-defendants. They will be turning their attention to you well within the statute of limitations for filing a case against you and Forbes.

Three things strike me. One, this is Wakefield acting off his own bat. He has not taken legal advice. That is pending. He has written a threatening letter to a blogger to bully her into silence “pending legal advice.“  Two, he is not going to do anything unless he gets a successful outcome in Texas regarding his action against the BMJ (Deer and his co-defendants ). Three, talk of prosecution and defendants in relation to civil law is a total nonsense. There is only one criminal in this case and he can count himself lucky that nobody has seen fit to prosecute him yet.

So why is he doing it? My best guess is that he has issued this threat and published it on Age of Autism to rally the troops and revitalize his flagging support. And why is he doing it to Ms Willingham? Perhaps he thinks she is more vulnerable than CNN or Time Magazine. Maybe he hoped that Forbes would take the corporate view and silence her to fend off a potential troublesome lawsuit. Not for the first time he has been proven wrong. Ms Willingham is an eminent scientist, an educator and an accomplished journalist. Forbes recognize her talent and show no signs of surrendering to Wakefield’s bluster.

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.

Tony Benn: the legacy

Herbert Shapiro is probably not that well known here in the UK. The son of Russian, Jewish immigrants he was a professor of history in the United States from 1964 until his death, aged 84, in 2012. His speciality was African American History and he wrote numerous books and articles on the subject. His obituary writer, fellow historian, Roger Daniels singled out his magnum opus, White Violence and Black Response: From Reconstruction to Montgomery (1988), as “Outstanding.”

Herbert Shapiro was not just a student of black civil rights. He was an active supporter and on March 25, 1965, marched on the last day of the historic march from Selma to Montgomery, Alabama as part of a delegation of historians. Daniels also pays tribute to his work as a trade union activist who helped to,

“transform the local chapter of American Association of University Professors into an effective collective bargaining unit, and to participate in two brief, successful work stoppages that improved both wages and benefits for regular full-time faculty.”

When I heard of the death of Tony Benn my thoughts turned at once to Herb and his wife Judith, both of whom I met on a train many years ago in the UK. As I recall our conversation began because Judith noticed a book I was reading about autism. She was an educator with an interest in the subject. The conversation turned to politics and I discovered that they were combining their holiday with a visit to their old friend, Tony Benn.

We parted on good terms never to meet again but kept up a sporadic correspondence. When the second Gulf War began Herb and Judith posted me details of the anti-war movement in Cincinnati. I posted them pictures of the million strong anti-war demo in the UK. Tony Benn, of course, was a leading spokesman for that movement. And, of course, in numerous tributes he has been damned with faint praise for holding to his principles, qualified by pointed reminders to the political outcomes. Benn fought and lost as did those of us who fought alongside him.

But those who seek to diminish his legacy in this way miss the point. Men and women of goodwill, courage and integrity who do what they think is right without regard for personal gain or ambition will always be found wherever there is injustice. Sometimes our courage might fail us. Too often we are outnumbered or outmaneuvered. But sometimes we prevail. Herb began his teaching career in a segregated college in Georgia. He introduced his students to African American history and lived to see an African American President of the United States of America.

Today’s obituary writers are eager to tell us not only that Benn failed, but also that he represents a dying breed, the like of which we may never see again. (They hope!) But so long as we are seeing levels of inequality in which the richest hundred people in the UK own as much wealth as the poorest 18 million (30% of the population) the conditions exist to create more not less people like Tony Benn. It is not a question of if but when.

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”.*