Action For Autism

Urine Test for Autism

WHAT THE PAPERS SAY

I had hoped that the press would have learned from their experience with Andrew Wakefield and the Great MMR Hoax. Perhaps now they would be more circumspect in reporting “breakthroughs” in the science of autism. But on the evidence of recent reports in the Mail, the Express and the Telegraph it seems my hopes were misplaced. All three papers carried reports on recently published research into Urinary Metabolic Phenotyping and Autism.

The Express story was the shortest and its headline was suitably cautious.

NEW TEST MAY SPOT AUTISM IN CHILDREN

It has all the essentials.

The Mail also maintains a note of caution in its headline

Revolutionary urine test for autism could soon diagnose children with the condition

Its story contains the same elements as the Express but adds that

• The diagnostic process is not only lengthy but also traumatic for young children.
• It is proven that autistic children have different microbes in their gut.
• The test should be available in 5 years time.

Both papers seem to have taken their story direct from the press release issued by Imperial College London. Both make much of the lengthy diagnostic procedures and suggest that a simpler biomedical test could replace these procedures. In this they misunderstand the nature of autism and the problems we face in getting a diagnosis.

At present the problem is not so much the length of the assessment  itself but the time spent waiting between appointments. First you need a referral, usually from a GP. When you finally get to see the diagnostic team there is not a uniform procedure. Then you wait for the report. Then, armed with your diagnosis the real work begins of identifying and accessing whatever services are available in your area. It would be better if everyone got to see a consultant paediatrician or child psychologist along with assessments for speech and language therapy, occupational therapy and a full medical work-up that led seamlessly from diagnosis to appropriate services tailored to the child’s individual needs.

If a urine test can be developed it will be more in the nature of a screening tool. It might conceivably expedite the initial referral but it will not replace the need for a detailed follow up.

THE HYPE

The Telegraph is rather more forthcoming in its headline.

Autism test could make the condition ‘preventable’

This goes way beyond what was claimed in the press release and is based on this quote from one of the researchers, Professor Nicholson.

“Children with autism have very unusual gut microbes which we can test for before the full blown symptoms of the disease come through.
“If that is the case then it might become a preventable disease.”

Professor Nicholson is an eminent and well respected scientist in the field of biological chemistry. But nobody on the research team has a primary qualification or research interest in autism. Dr Yap is a member of the National Autistic Society. Dr Angley is a pharmacist who has turned to autism research and published papers on biomedical interventions for autism. But they appear to have been ill-advised on the present state of academic research into autism, particularly in regard to the gastro-intestinal tract. This may be down to the fact that they offer

thanks also to Dr. D. Granpeesheh (C.A.R.D, Los
Angeles, Ca.) for helpful discussions on the manuscript and
related data.

Doreen Granpeesheh has been a long time colleague and supporter of Andrew Wakefield and her C.A.R.D. organization continues to provide educational services to parents who attend Thoughtful House, the Texas clinic that Wakefield established after his departure from the UK. This may explain the uncritical acceptance of papers by Wakefield and others on the fringe of autism research that informs this paper’s position on a unique disturbance of microbes in the gut of autistic people. LBRB and Countering Age of Autism both discuss the questionable nature of these sources.

Even so, Professor Nicholson is going far beyond the study’s findings with these speculations. He is suggesting that the alleged abnormal microbial environment in the gut is what causes autism. The journalist, Telegraph Science Correspondent, Richard Alleyne extrapolates from this to suggest that

Eventually the link between the learning difficulties and the gut microbes could be established and that could lead to “probiotic” treatments or cures.

It is not always clear to this reader whether Alleyne is expressing his views or paraphrasing Professor Nicholson. Either way, the entire piece displays intense ignorance about autism.

We are told that early intervention can prevent permanent psychological damage. Diagnosis presently occurs after the damage has been done. Early intervention is delayed because it is currently difficult to establish a firm diagnosis until children begin speaking.

But even if we had a reliable urine test at 6 months of age what sort of intervention is envisaged at that age? Glenn Doman’s quackery?

THE PRESS RELEASE

I do not understand why Imperial College issued a press release about this. It is a pilot study. The results are interesting but will not be significant until they are replicated on a larger scale. The study itself is very honest about its limitations and the need for more work. If there is to be a simple test for autism it is still years away.

It is easy to criticize the media for misleading coverage of scientific affairs.But in this case the media seem to have been misled by ICL. The press release begins thus:

Children with autism have a different chemical fingerprint in their urine than non-autistic children, according to new research published tomorrow in the print edition of the Journal of Proteome Research.

No matter how much they qualify this opening statement, that is the headline for any news editor. But is it true? To answer that we have to look at the study itself.

WHAT THE PAPER SAYS

I have read the paper in question. It is not an easy read and I do not pretend to understand all of it, especially the technical discussion of methodology and the statistical analysis of results. But, having read a lot of autism research in recent years, a number of questions occur to me.

Recruitment

Normally studies like this go into some detail about how the subjects were recruited. This is because so many details can confound a study. Are subjects matched for age, gender and socio-economic status? As we are looking at biomedical markers in urine at what time of day was it collected? Were all subjects controlled for diet, supplements and medication? We are not told. Bizarrely, part of the control group was recruited in Switzerland. all the rest were Australian. Why? We are not told.

Results

The “unique fingerprint” claim suggests to a lay audience (and the claim was made in a press release aimed at a lay audience) that they tested the urine and the results showed three distinct results - autistics, siblings of autistics and controls. However, the way they tested showed so many variations between individuals that autism specific variations were not  that obvious. They had to run the results through a sophisticated statistical analysis to identify any significant differences. Different methods of analysis revealed different results.

Visually, allowing for the interindividual variability, the urinary spectra were very similar, but the autistic individuals showed subtle differences in urinary succinate, N-methyl nicotinic acid (NMNA) and N-methyl nicotinamide (NMND) compared to the controls, as evidenced from the median spectra shown in Figure 1.
Multivariate Statistical Analysis of the NMR Spectral

To further explore the metabolic differences between the three groups of participants, multivariate statistical analyses were employed on the full resolution NMR data set consisting of 34 controls, 28 siblings and 39 autistic urine samples to extract useful metabolic information. PCA was carried out on UV-scaled data to identify any inherent differences within the data set. The resulting scores plot of PC1 versus PC2 (Figure 2A) showed no clear differences between the three groups, all pairwise combinations of PCs down to PC3 were examined, which showed no discrimination indicating that the major source of variation in the data was not related to autism, but was rather dominated by interperson variability.

However by utilizing group information in PLS-DA analysis, systematic differences could be observed between the three groups (Q2 ) 15%; R2 (goodness of fit) ) 65.7%). The corresponding crossvalidated PLS-DA scores plot (Figure 2B) showed clear separation between autistic individuals and the controls and partial separation between siblings and the controls.

I take that to mean that when looking at the data for each individual there was not a single feature, a chemical fingerprint, that identified all the autistic individuals. But when they looked at each chemical in turn and checked its prevalence in each of the three groups they did find a statistically significant difference between groups. They may have identified potential fingerprints but they have no reliable way, as yet, of using them to identify autistic subjects.

Interpretation

There is a lot of discussion of how the results may be indicative of metabolic dysregulation that fits with certain hypotheses about possible metabolic pathways in autism, always with the caveat that further studies are required. I feel that this discussion is premature. All the weaknesses above - the over hyping of results and the attempts to present a preliminary study as supporting a hypothesis about the gut and autism that is much disputed and lacking in hard evidence - all this finds its basis in similar overreaching assumptions in the paper itself. Something is going on here in addition to the science that threatens to subtract from any merit the study might have.

And the study is not without merit. It would indeed be a step forward if we could establish biological markers for autism. But any follow up will have to address the waeakneses identified in this excellent commentary from NHS Choices

The research has several limitations:

The researchers point out that, as it is not possible to tell whether these differences indicate a cause or consequence of the disease, further research is needed in a larger group of children over time.
Different statistical analyses had different results, some showing differences in certain chemical levels in autistic children, while others did not.

The researchers did not assess the medications the children with autism were taking for their condition or the diet they were following. Both would affect the chemicals they found in the children’s urine samples.

Finally, these children had already been diagnosed with autism, and the study design was cross-sectional, looking at their urine samples from only one point in time. It is not possible to say whether there would be any differences in the chemicals found in the urine in younger children prior to standard diagnosis, and whether it could be used as a diagnostic tool.

This is encouraging research, but it is too early to say whether this research would be of benefit in terms of providing an additional diagnostic tool for autism in children.

June 6th, 2010 Posted by Mike | journalism, research, science | 8 comments

Mitochondrial disorder and autism

When Hannah Poling won her claim for an adverse vaccine reaction that triggered a pre-existing mitochondrial disorder and caused her to develop autistic symptoms it created quite a flurry in the autism world.

The strange thing was there were at least 5000 families in the Autism Omnibus Proceedings who believed that vaccines had caused their child’s autism. Their lawyers had spent years collecting medical evidence to support their claims. But when they presented their evidence in test cases before the Office of Special Masters of the U.S. Court of Federal Claims there was no mention of mitochondrial disorder. Hannah Poling was due to be one of those test cases before she withdrew from the Omnibus Proceedings because her mitochondrial disorder set her apart from the other petitioners.

The obvious conclusion remains that hers was a special case and her settlement has no bearing on the general causation theories of the Omnibus Proceedings. However publicists for the petitioners have tried to spin her story as follows.

They say vaccines do not cause autism. Here we have a case where vaccines do cause autism. Therefore why shouldn’t it cause autism in the rest of our cases?

Except that they were arguing for a completely different mechanism that did not involve mitochondrial disorders at all. This point was not lost on some of them. Take vaccine injury lawyer Robert Krakow, himself the parent of an autistic child. He was intimately connected with the Omnibus for many years. In fact his was to be the replacement test case for Hannah Poling until he decided that the evidence for mercury causing autism was so weak that he jumped ship and is now pursuing his own claim for a vaccine induced mitochondrial disorder.

The vaccine-autism email lists were suddenly full of enquiries into “tests for mito.” Previously ignored research that had looked at links between mitochondrial disorder and autism was taken up by anti-vaccine bloggers as proof that these susceptible children were the real driving force behind the vaccine induced autism epidemic.

To do so they had to ignore a couple of inconvenient truths, in addition to the aforementioned failure of the petitioners’ legal teams and medical experts to uncover any link between autism and mitochondrial diseases.

1. Support groups for mitochondrial disorders and experts in the field were all agreed that vaccination was the best option for these children to protect them from the devastating consequences of exposure to full blown infection with vaccine preventable diseases.
2. Prior to the Hannah Poling case extensive research into mitochondrial disorders had not identified autism as a significant consequence. That is why the case took everybody by surprise.

The research findings could contradict previous concessions by the US Department of Health and Human Services that suggested a possibility that vaccination might have aggravated a child’s underlying mitochondrial disorder and caused her autism symptoms.

“After that ruling, there was some concern that vaccination may place some children with genetic disorders at increased risk for autism or other adverse effects,” said Nicola Klein, MD, Kaiser Permanente Vaccine Study Center, Oakland, California, on October 30. “But we found no increase in emergency room visits or serious side effects” among children with inborn errors of metabolism.

“Most of us who take care of kids with inborn errors of metabolism think vaccination is one of the best interventions we can offer them,” he said. “They are at increased risk for devastating complications, even death, from the diseases that the vaccines prevent.”

November 2nd, 2009 Posted by Mike | research, vaccines | 14 comments

Autistic skill or social deficit?

Research from the Yale University Child Study Center provides further evidence that autistic children view the world in markedly different ways than their non autistic peers. They were specifically looking at differences in attention to biological movement. According to the announcement by the National Institute of Health, who helped fund the study:

The researchers borrowed a technique from the video game industry, called motion capture. They then reduced the movements to only points of light at each joint in the body, like animated constellations. These cartoons played normally — upright and forward — on one half of the screen, but upside-down and in reverse on the other half. The inverted presentation engages different brain circuits and is known to disrupt perception of biological motion in young children. The normal soundtrack of the actor’s voice, recorded when the animations were made, accompanied the presentations.

You can view some of these animations in the New Scientist report on line 

Yale recruited a sample of autistic toddlers and two control groups - normally developing toddlers matched for age and non-verbal intelligence and developmentally delayed toddlers matched for age and verbal intelligence. Then they showed them the animations and measured their attention to the biological and non biological animations.

Virginia Hughes, writing for the Simons Foundation Autism Research Initiative, tell us that

the toddlers with autism showed no preference for the upright figure when watching the peek-a-boo animations, looking at it 50.7 percent of the time, compared with 58.9 percent of the time for the developmentally delayed group and 62.7 percent for typical controls.

When watching the pat-a-cake animations, however, the autism group looked at the upright figure 65.9 percent of the time, significantly more than at the inverted figure. The pattern for the two control groups remained the same.

Not surprisingly non-autistic children showed a preference for cartoons played normally. Autistic children seemed not to have a preference, except for the pat-a-cake animation. The study team realized that this was because the movement of the dots of light synchronized with the clapping sound in the sound track. So they looked for less obvious audiovisual synchronies (AVS) in the other four animations. The AVS was less powerful in these other four animations than in the pat-a-cake example but still they found

“Audio-visual synchronies accounted for about 90 percent of the preferred viewing patterns of toddlers with ASD and none of unaffected toddlers,” said Jones. “Typically-developing children focused instead on the most socially relevant information.”

To test if the autistic toddlers were attending to AVS in preference to biological movement they recruited a fresh set of autistic toddlers and devised two more animations whose AVS was stronger than the unintended AVS in the four animations but less than the powerful AVS of the pat-a-cake animaton. If autistic attention was related to the strength of AVS they should be able to predict the new cohort’s preferred viewing patterns. And they did.

The study provides strong evidence that autistic toddlers do not have a preference for biological movement but are drawn to AVS that are ignored by non autistic peers and are not immediately apparent to research scientists without the assistance of computer analysis. This is potentially both a benefit and a deficit. Elizabeth Moon has written a novel, The Speed of Dark, about autistic adults whose ability to detect patterns and synchronies was valued while their need for accommodations in order to exercise this ability was decried. The novel’s strength derives in part from the author’s ability to exploit the dramatic tension between these two conflicting positions. 

In contrast the present study does not even begin to acknowledge the potential strengths of this talent for detecting synchronies. Instead it focuses entirely on the negative aspects. The authors suggest that because attention to biological movement is such a robust feature, occurring across species and persisting in humans who are blind or cognitively impaired, its apparent absence in autism is enough to explain all the familiar impairments. 

The authors explain it thus

Typically developing human infants preferentially attend to biological motion within the first days of life1. This ability is highly conserved across species2, 3 and is believed to be critical for filial attachment and for detection of predators4. The neural underpinnings of biological motion perception are overlapping with brain regions involved in perception of basic social signals such as facial expression and gaze direction5, and preferential attention to biological motion is seen as a precursor to the capacity for attributing intentions to others6.

There is a problem here. Klin et al argue that autistic subjects do not exhibit preferential attention to biological motion. Then they up the stakes dramatically with their reference to the ability to attend to biological motion. Ability and preference are not the same thing. Then comes another giant leap, suggesting that because of neural overlap with brain areas associated with facial expression and gaze direction, a preference for biological motion is somehow responsible for theory of mind.

So, rather than being an ability, enhanced awareness of audio-visual synchronies is a disability because it comes at the expense of attending to biological motion, which is believed to be critical for bonding with a caregiver, recognizing danger , developing social cognition and acquiring theory of mind.  It may be that Klin et al are right and this skill is critical. But it is a bit of a leap to suggest that this is what their experiment tested for and that it is lacking in autistic children. If it is so highly conserved across species, the fact that it is not evident in autistic subjects in this experiment suggests not that it is absent or weak, rather that it is being overridden by higher brain functions. If it is so basic to survival that snails have it, its lack should present as a catastrophic deficit in humans. It would be interesting to devise an experiment to discover in what circumstances autistic children (and adults for that matter) do exercise a preference for biological movement. If it is so important we should be looking for ways to encourage it that do not diminish the achievements of autistic children in attending to patterns and synchronies in their environment.

Klin’s research is valuable. It is a pity that the commentary on the results overstated its importance and sought to overplay the potential disabling effects for autistic people while failing to acknowledge any potential strengths that might derive from synchronous thinking. Research that adds to our understanding should not need to be dramatized in this way.

Footnote

Morton Ann Gernsbacher has written some trenchant pieces about how preconceptions can influence the interpretation of research results. For example

Using the Deese-Roediger-McDermott “false memory” paradigm, two groups of participants were presented auditorily with lists of semantically related words (e.g., bed, rest, awake, tired, and dream), and later asked to discriminate between words they’d heard and words they hadn’t heard, including words that were semantically associated to words they’d heard (e.g., sleep). As shown in Figure 2, the green group demonstrated significantly better memory discrimination than the purple group; the green group was less likely to falsely recognize words they hadn’t heard, despite the false words’ semantic association with words they’d heard.

The green group’s better memory discrimination was attributed to their mentally representing words “in an aberrant manner,” even though a concurrent — and direct — test of semantic clustering found no differences between the green and purple groups. The green group’s aberrant semantic mental representations was hypothesized to stem from “anatomic abnormalities … or as a result of an as-yet unknown pathology.”

When another research team reported no difference between green- and purple-type participants in either false recall or false recognition, the authors of the study that had observed the green group’s better discrimination interpreted the other study’s lack of a between-group difference to the green group also having “frontal-executive impairment.”

No prizes for guessing that the green group were autistic. In another article she points out that if you are autistic:

having a thicker cortex than someone who is not autistic is considered bad (Hardan et al., 2006) — and having a thinner cortex than someone who is not autistic is also considered bad (Chung et al., 2005; Hadjikhani et al., 2006a, 2006b). Your thicker cortex might be a function of higher fluid intelligence (Dawson et al., 2006; Fjell et al., 2006); your thinner cortex might be a function of better memory retrieval (Sowell et al., 2001). It doesn’t matter: If you’re autistic, having either a thicker or thinner cortex is just considered bad.

May 12th, 2009 Posted by Mike | neuroscience, research | 23 comments

Positive autistic outcomes in Utah

I have commented in the past on inflated figures for the costs of autism across the lifespan. These figures are sometimes used to justify calls for mandatory financial coverage of treatments and therapies that are supposed to normalize behaviour. The alternative is an alleged economic meltdown as the putative autism epidemic places an intolerable burden on the economy.

Recent research suggests that adult outcomes do not necessarily match this doom-laden scenario. A study from the University of Utah has looked at what happened to young people from an earlier study now they are all adults. They followed up 41 of the original 241 autistic Utahns. All had a measured IQ in childhood that was greater than 70. According to the press release

For the follow-up study, the researchers assessed the participants’ overall social outcome by their ability to maintain paid employment, the existence of meaningful social relationships, and their degree of independence in daily life. From these criteria, an individual’s overall social outcome was assigned to one of five categories: very good, good, fair, poor, and very poor:

• Very good meant the person held paid employment without extra support to perform job duties, had important social relationships, and a high independence in daily life.
• Good indicated the individual had a generally high level of independence at work and in daily life, requiring some extra support, and also had a friendship or some acquaintances.
• Fair reflected the need for regular support at work or home, but the person did not have to live at a special residential facility. The participants in this category had acquaintances through special activities but no particular friends.
• Poor showed the need for a high level of support, such as a residential living facility and planned daily activities for people developmental disabilities. Those in this category had no friends outside their residential living arrangements.
• Very poor meant the individual required a high level of care in a hospital setting with no autonomy and had no friendships.

By these measures, the researchers found that 24 percent of the participants had a very good social outcome; 24 percent had a good outcome; 34 percent had a fair outcome; and 17 percent were rated in the poor social outcome category. No one’s social outcome fell into the very poor category.

The original study, published in 1989, used DSM III diagnostic criteria. DSM III used very narrow criteria based on Kanner’s descriptions of autism and excluded many of those who would qualify for a diagnosis of autistic disorder using modern DSM IV criteria along with all those who currently meet DSM IV criteria for PDD-NOS and Aspergers disorder. So, even though the follow up looked at outcomes amongst the most able subjects of the original study (those with IQ >70), it is reasonable to surmise that all would be regarded by today’s standards as severely autistic.

Yet nearly half of them enjoy good or very good outcomes, requiring very little support. If the researchers had followed up the entire cohort, including the two thirds with an IQ < 70, no doubt there would be many more with a poor or very poor social outcome. However most people identified with autism today are at least as able as the subjects of the present study. So how did they achieve such positive outcomes in Utah?

My thanks to Dora Raymaker at autism.change.org for linking to a possible explanation. I had forgotten that Utah is home to the Church of Latter Day Saints (LDS). LDS culture is supposed to be inclusive of people with disabilities and fosters close knit communities with supports that bridge the generation gap. This is not to say that there is no downside to being autistic in Utah. According to the Salt Lake Tribune

Still, about half of the adults in the study are on Medicaid, live with their parents and need a lot of help from family or social service agencies with jobs, relationships and personal care. A sizeable number have had trouble with the law or have other medical disorders, from anxiety and depression to trouble sleeping.

And in another story the same reporter writes of a family where an adult son is still dependent on elderly parents.

At ages 68 and 62, Carl and Valerie Jensen have asked another son to care for their youngest when they die.

The Jensen family are the son’s main source of social contact, along with a group of friends he made in special education classes in high school. The social support he once had through his LDS ward is largely gone now that his peers have moved on and married.

Despite these caveats it does seem that if society can be organized in an autism friendly way then autistic people can live fulfilling lives without bringing the economy crashing down. We still need to make proper provision for vulnerable people. In doing so we should be guided by a desire to improve their quality of life rather than seeking answers through prevention and cure.

March 24th, 2009 Posted by Mike | adults, autism acceptance, research | 5 comments

National Autistic Society International Conference - impressions

Last month I attended the International Autism Conference organized by the National Autistic Society. Unfortunately I had to leave early in order to get home before scheduled engineering work severely curtailed my rail journey home. So I had to leave part way through Stephen Shore’s presentation and miss the presentations from Rita Jordan and Simon Baron-Cohen.

My primary reason for attending the conference was to deliver a poster presentation advertising the Autism Hub. This was hardly onerous, though not without controversy. See the discussion on my previous post for details. I had to arrive early on the Friday morning and put the poster up in the designated area. Thereafter it was my job to be available during breaks when people visited the poster area and to give out calling cards for the Autism Hub. I wore my Hub T-shirt throughout and had some interesting conversations, mainly with people who were curious about what blogging was. For those of us who blog or otherwise use the web to interact on a regular basis it is easy to forget that for many people the internet is something they visit for information or entertainment. Participation in online communities is not central to many people’s involvement with autism.

This will probably change. When it does, it may be that social networking sites like Face Book are more important than blogging and we bloggers will become oddities, like previous participants in Usenet and bulletin boards. Of course Face Book may have become completely passé by then and overtaken by some new development. For all I know it has happened already and nobody told me!

Back to the Conference

The first International Conference, three years ago, began with a marvellous introduction from Lorna Wing. This year we were treated to an equally inspiring opening. Only this time it was a drama presentation, on film and live on stage, by autistic students from the Sybil Elgar School in London. They were superb! I hope the video is posted on YouTube.

In contrast, the opening presentation from Sir Michael Rutter was serious and low key. Rutter has been involved in autism research almost from the outset. He is uniquely placed to give us an overview of what we know and what we still need to learn about autism. The answers to these two questions were at the heart of his presentation. The result was an authoritative review of the current state of scientific knowledge and of the limitations of that knowledge. Rutter made a very interesting point in relation to ABA – Applied Behavioural Analysis. He regards its efficacy to be non-proven mainly because in all the studies to date nobody has controlled for two key variables. Is it the earliness, the timing of the intervention that is crucial or is it the intensity? Interestingly, he did not comment on the most important variable, the content of the intervention. Perhaps any dream will do?

Rutter is old school. He clearly subscribes to the deficit model of autism as a condition defined by its impairments. At one point he remarked on the fact that of all the mental disorders, Tourettes, Schizophrenia, OCD, ADHD, etc., autism was unique, in that it was the only one that did not respond to neuroleptic drugs. My immediate thought, which I later found was shared by some others in the hall, was that if autism was so unique amongst all the mental disorders in its resistance to drug treatments, perhaps it was not a mental disorder after all.

The conference styled itself as “Research into Practice.” I was looking forward to contributions that brought us leading edge research that would either challenge Rutter’s position or at least take up the unanswered questions he posed to conference. Unfortunately the “big draw,” Professor VS Ramachandran with his theory of mirror neurons had cancelled and a re-jigged agenda, while retaining interest, was a trifle ordinary by comparison. By lunchtime on the second day I had enjoyed a good conference but felt that there was very little new that I could not have found elsewhere, either online or by reading the literature. Perhaps, if the rail schedule had permitted, I would have been suitably “wowed” by Rita Jordan and Simon Baron-Cohen. Never mind. There were compensations.

One highlight was a panel discussion of media presentations of autism. It was chaired by NAS president and actress Jane Asher, who famously appeared in an episode of Holby City which featured a storyline about her character’s involvement with a young man with Aspergers Syndrome. The panellists were Alex Thomson - Chief Correspondent of Channel 4 News and parent to an autistic child; Dr Stuart Murray - Leeds University and author of Representing Autism; Diana Kyle - Holby City series producer; documentary film-maker Saskia Baron, whose brother is autistic; Angela Pell - screenwriter of the film Snowcake; Henry Normal – married to Amanda Pell, writer and TV producer (he and Amanda have an autistic son); and Ros Blackburn who is autistic and worked closely with Sigourney Weaver when filming Snowcake.

Some interesting themes emerged.

Like many of us, Alex has been ill-served by the system with respect to his child. He wanted the National Autistic Society to be more forthcoming and provide leadership that could shape the media agenda on autism, rather than respond to it. The news agenda is not necessarily one that best serves the interests of the autism community. Take the MMR hoax, which began with a rogue scientist but was only sustained by persistent media attention. Alex’s partner has recently produced a report on Ben Haslam that I blogged about. This is an example of the real autism stories that need telling in the media.

Stuart made the point that while we might hope and expect documentaries and news reports to provide a more accurate representation of autism, fiction has a much higher impact. Discussion centred on the use of autism as a prop. Diana made the point that the story has to come first and the autistic character has to emerge from the plot and not just be a cypher or a McGuffin in Hitchcock’s famous turn of phrase. Diana also informed us that with Holby City, a hospital drama, there was a three month lead in to every episode in which patient advocacy groups were consulted to ensure accurate and respectful portrayal of the medical condition that featured in the episode.

Angela stressed that the autistic character in Snowcake did not change. The audience still identified with her. They were challenged and they had to change. Instead of “make me normal” we had “make you more accepting.”

Saskia spoke of television being an unsubtle medium. It tends to go for the obvious, the dramatic. Hence quiet stories of everyday life, something she strives for in her work, are hard to capture and portray.

During the discussion autistic adults spoke up about the importance of being valued and not being constantly portrayed as “damaged goods” by the media. But while autistic people deserve acceptance and understanding, that does not mean that they do not experience real problems as a result of their autism alongside those problems that arise from other people’s ignorance. Ros spoke eloquently about the problems that autism cause for her and her fervent wish that research could provide her with some relief from these.

There was a lot more. But overall I got the impression that it is possible to get accurate and effective portrayals of autism into the media and on to prime time television provided we do our homework, take time to understand their agenda and give them a story they can tell with confidence.

The Triad of Perspectives

Olga Bogdashina was a marvellous plenary speaker. Like many professionals her introduction to the world of autism came via her own children. She shared with us the terrible judgement that she received from a consultant, that her son was a hopeless case and it would be better if he had died. “Better for whom; me, him or you?” was her splendid reply. Suffice to say that mother and child are doing well and so is his autistic sibling.

She criticised the triad of impairments as too one-sided. Why are all the impairments on the autistic side? What if it is a triad of differences? Difference may make communication hard work. But maybe the reason is that we lack a Theory of the Autistic Mind. She spoke at length about the Triad of Perspectives, how parents, professionals and autistic people all view autism differently and we all have our own impairments. I really warmed to her descriptions of the active but odd professional (I’ve been to a conference so now I’m an expert) and the passive parent. (Tell me what to do, not why)

She also gave an excellent workshop on communication. Autistic people do not communicate in a defective way that needs correcting. They communicate in ways concordant with their perceptual and cognitive experience of the world. Instead of trying to “fix” them and teach compliance to our mode of communication, we should learn to understand their experience and look for ways to translate between the two modes. Rather than insist on them using our mode all the time, perhaps we should demonstrate our legendary theory of mind and try and communicate on their terms.

I received a practical illustration of this when I struggled with the presentation on Oxytocin by Professor Evdokia Anagnostou. I found her slides difficult to read and her accent difficult to understand. And she spoke very quickly about a complex subject, making no concessions to this particular listener’s lack of knowledge.

I had a similar experience with Larry Arnold’s workshop on the progress of his PhD thesis: “Video as an educational tool in Autism, an under researched topic.” In this case, although I had no problems following his arguments, I did challenge him later on the complexity of the ideas in his presentation. Larry made the telling point that this was an international conference. He was not explaining his ideas to the uninitiated. He was opening up his research to critical commentary by his peers.

Challenges Faced by Families

Olga’s presentations chimed well with the family workshop featuring Virginia Bovell, John Dickinson, Josh Muggleton, and Steve McGuinness. There was no sugar coating of the difficulties that autism can bring but they still managed to strike a positive note.

Virginia is the mother of a severely affected child who attends a specialist school based on the principles of ABA. She spoke honestly about the pressures that autism places upon the whole family, a theme reiterated by her fellow speakers. She also discussed the symptoms that are sometimes disregarded by clinicians as behavioural manifestations of autism rather than being diagnostic of additional medical conditions and paid tribute to the doctors at the Royal Free in London who saw past her son’s autism to treat his gastro-intestinal disorder and continue to make his appointments as stress free and autism friendly as possible. It is good to know that the notoriety that Andrew Wakefield attracted during his time there has not caused lasting harm to this proud institution.

John was particularly poignant in his account of raising his high functioning daughter in an era before high functioning autism and Asperger Syndrome were recognized. In his daughter’s case diagnosis came in early adulthood. My own son was not diagnosed until he was 12 and I well understand the regret at missed opportunities to ease a child’s path through autism. As an aging parent I also share John’s concerns for the future after his death and how this affects not just his daughter but also her neurotypical siblings.

Josh, who has Asperger Syndrome, was also concerned that the needs of siblings should not be neglected. He knew that autism made life difficult for those around him. He also knew that other people’s attitudes to autism were also a problem. He was bullied “because” he was autistic. Or was he? When siblings and parents are bullied (again, I speak from experience) are we bullied because of autism or because there is something wrong with the bullies? It need not be overt bullying. Social isolation affects the whole family.

Steve, who is autistic and the parent of an autistic child, suggested that people with autism are more tolerant of non-autistic people than we are of them. Barriers to inclusion are erected by non-autistic people who lack knowledge and understanding of autism. Autistic people spend their whole lives trying to understand and adapt to societal norms. When they succeed they are given little credit. But when they stumble they are condemned. The media is quick to promote negative images of autism, whether it is the imputed financial burden on the state or the invocation of autism as the reason whenever an autistic person commits a crime. Neurotypicality is never invoked as an explanation of criminal behaviour, even though most criminals are neurotypical and not autistic.

Virginia told me that all of them wanted to stress that it was as much society’s response to autism, as the autism itself, that people should be looking at when thinking about pressures and challenges.  Too often people hone in on the ‘disorder’ without looking at how much easier life could be if society was more understanding and generous towards autistic people and there families. That hour probably said more about the needs of autistic people and their families than any other session at the conference. Next time the organizers should make it a plenary session and not a workshop so everyone can benefit from it.

Research into Practice

So, a good conference, but it could have been better. I noticed the numbers were down, six hundred compared to a thousand at the previous conference. That suited me. It was more manageable and less overwhelming. But we also had the IMFAR conference in London earlier this year which may have stolen some of the thunder from the NAS.

My impression was that the question of how autistic people perceive and understand the world was fairly central to the whole event. All the workshops and plenaries that directly involved autistic people, the presentations by Olga Bogdashina and the workshop by Michael McCreadie of Daldorch House School on “Sensory issues in autism,” they all presumed that the autistic perception of the world was as valid as the non-autistic perception of autism. If “Research into Practice” is to become more than a conference title, then autism researchers will have to go beyond the view of autism as deviant behaviour based on defective neurology. They need to consult with autistic people about their priorities and their perceptions in order to inform research priorities in the future.

October 7th, 2008 Posted by Mike | National Autistic Society, Neurodiversity, research, science | 6 comments

Hub Bloggers at the International Autism Conference in London

Well, I am off to London tomorrow to the International Autism Conference. As well as meeting up with old friends and listening to some of the leading edge contributors to our knowledge about autism I shall also be making a modest contribution to the proceedings when I present a poster entitled The Autism Hub: how blogs can help inform research priorities. This is what it says.

Introduction

The internet is widely used by members of the autism community as a source of information, guidance and support. Different experiences of autism have led to the formation of online communities that often have opposing views.

A recent study (1) that predates the formation of the Autism Hub analysed the content of autism blogs and suggested that there is a divide between the aspirations of parents and autistic adults. Parental experience of the difficulties associated with raising an autistic child leads them to look towards science and medicine to tell them what causes autism and, more importantly, how to cure it. Adults who have come to an accommodation with their condition seek understanding and support but do not want to be cured of who they are. Some would go further and, taking their cue from Hans Asperger’s positive reference to autistic intelligence, (2) argue that there are particular aspects to autistic thinking that society could ill afford to lose if we ever found a way to eliminate autism. This idea of valuing people and accepting their differences is usually referred to as Neurodiversity.

There is also a history of divisions between parents and professionals. This has its roots in the discredited idea of refrigerator mothers from a time when psychodynamic theories reigned supreme. Parents rejected the received scientific and medical wisdom and were vindicated when autism’s biological roots were established in the late 1960s. Nowadays a significant number of parents reject the idea that autism is largely genetic in origin and believe that the growth in recorded numbers indicates an autism epidemic.  They believe that this “epidemic” can only be explained by neurotoxins that are poisoning the brains of otherwise healthy children.  Controversially they believe that vaccines are a prime source of these neurotoxins. Even more controversially they believe that biomedical interventions, including chelation, special diets and hyperbaric oxygen therapy can reverse this damage and “recover” their children. They are encouraged in their belief by a range of alternative therapists promoting pseudo-scientific theories and so-called cures. These “brave maverick doctors” and the parents who support them expect to be vindicated just as the opponents of the refrigerator mother theory once were.

The Autism Hub - Origins

The Autism Hub began in part as a response to this biomedical movement. The mainstream scientific and medical community dismissed them. But they continue to influence public opinion via the media and influential supporters in public life, especially in the USA. We regard their terminology referring to toxic children, devastating disease, autism tsunami etc. to be offensive and damaging to autistic people. Some of their treatments are potentially dangerous or distressing to autistic children with no discernible benefit. A number of hub bloggers are professionals in the fields of education, information technology, science and medicine who happen to be the parents of autistic children.  They have devoted their time and expertise on their blogs to debunking the myth of an autism epidemic and the claims of the biomedical movement.

The Autism Hub – Growth

This quack busting role is still important but our real growth has come from promoting the idea of Autism and Acceptance and Neurodiversity. This comes from the blogs of autistic people, the majority of Hub bloggers, who provide a thoughtful and often challenging perspective on their lives and also from parents who have learned that the best way to help their children is to work with their autism rather than against it. We identify our children’s strengths and seek to develop these rather than always focusing on deficits and disorders. Our children are so much more than the sum of their imperfections. Perhaps the most striking example from a parent is Estee Klar Wolfond’s’ “Joy of Autism” blog out of which has grown “The Autism Acceptance Project.”

The Autism Hub – Science

As well as debunking bad science and providing positive images of autism, the Hub seeks a constructive engagement with mainstream scientists and practitioners in the field of autism. We are concerned that so much science is presented in terms of “curing,” “preventing” or otherwise “eradicating” “this devastating disorder”.

1. The language used is extremely disturbing to autistics, who read this and think they are going to be eradicated. Research scientists may not mean that. But if the people they are trying to help feel threatened by what they hear perhaps scientists should choose their words more carefully. 
2. An unremittingly negative view of autism can also lead to acceptance of risks that would be unacceptable in a non-autistic population. To take a recent example, researchers at the National Institutes for Health proposed to test anecdotal claims for the benefits of chelation by chelating a sample of autistic children. They specifically ruled out children who had high levels of lead or mercury because it would be unethical to give placebo to children who needed treatment. We consider it equally unethical to treat healthy autistic children for metal poisoning and find it significant that no healthy non-autistic controls were to take part in the trial. Hub members blogged this extensively and lobbied the NIH with our concerns. The trial is halted for now because an animal study suggested that healthy individuals could suffer cognitive damage from unnecessary chelation.
3. Most autism research is presented in terms of deficits and dysfunctions. There are some well documented cases of autistic abilities. One of the Hub members, Michelle Dawson, is closely involved in the work of a lab that is promoting autistic abilities. She is autistic and, despite a lack of formal academic training is seen as a valued colleague by her fellow researchers, and has been lead author on one of their peer reviewed papers. (3)
4. Another Hub member, Amanda Baggs, achieved temporary celebrity status with a YouTube video that resulted in her sharing valuable insights with researchers at MIT.

The Future

Computers have been described as “wheelchairs for autistics.” The analogy holds good. Computer technology and the internet have empowered many who would find normal face to face interactions extremely difficult. They can build web sites, write blogs and create videos. Indeed, the Posautive blog on the Hub is devoted to bringing these videos to the wider world.
It is also the case that without the technology it is impossible to imagine the people who make up the hub ever coming together, separated as we are by class, culture and country. But we have come together. The NAS has a campaign for autistic adults, “I exist!” and full marks to them for that. But the internet is helping to develop a collective voice and vision for autism.

WE EXIST!

We exist in real life as well as on the web. We are here today at this gathering of the autistic community because we want dialogue and partnership with autism researchers. In the USA we have successfully joined an event at San Diego University where Hub members presented to the research community there. We are planning a similar event in the UK.

CONCLUSION

1. 1. Autism Hub is a not for profit grouping of autism bloggers from around the world funded entirely by its members.
2. We are the only online organization that brings together parents, practitioners and autistic people based on the principles of neurodiversity and autism acceptance.
3. We seek to advertise our presence to the broader autism community as we did with our recent presentation at the Summer conference of the Autism Institute at the University of San Diego. 
4. We welcome evidence based support for autistic people and research that addresses the hopes and aspirations of autistic people and their families. 
5. We feel that our perspective is one that is rarely heard within the research community and hope that a conference that poses the question, ‘How does research help people with autism?’ would want to hear our voice.

References

1. Clarke J, van Amerom G. Asperger’s syndrome: differences between parents’ understanding and those diagnosed.  Soc Work Health Care. 2008;46(3):85-106.

2. Uta Frith. 1991 Autism and Asperger Syndrome Cambridge University Press,

3. Michelle Dawson, Isabelle Soulières, Morton Ann Gernsbacher, Laurent Mottron. The Level and Nature of Autistic Intelligence Psychological Science Volume 18 Issue 8, Pages 657 - 662

September 17th, 2008 Posted by Mike | Neurodiversity, autism advocacy, research | 25 comments

UK Press and MMR: Let me hear your voice, please.

On Wednesday I blogged about an important new study that added to the weight of evidence that there is no link between the MMR vaccine and autism. You would imagine that the UK press would be all over it. After all, we invented the MMR/autism crisis back in 1998 when the medical establishment failed to address the fears that were articulated by Dr Andrew Wakefield at that press conference. The media sensed a good story and magnified those fears until they became endemic in society. 10 years later the story rumbles on and now measles is endemic in society again.

Ben Goldacre, one of the few noble exceptions to the generally abysmal reporting, recently castigated fellow journalists for their role in creating and perpetuating what he describes as the Media’s MMR Hoax. In recent weeks they seem to have got the message. Reporting on MMR is beginning to reflect the scientific evidence. No doubt editors’ minds have been concentrated by the news that we face a measles explosion. A cynic might suggest that they have merely dropped autism in favour of the latest health scare. Nevertheless there was near universal and favourable coverage in August of a government initiative to vaccinate the estimated 3 million children in the UK who have missed one or both of their MMR jabs.

So I was eagerly awaiting the coverage of this novel Columbia University study. It was novel for three reasons.

Firstly, it was a direct attempt to replicate the original study by Wakefield et al that created the furore in the first place. This has been a constant criticism from Wakefield supporters of every other study that has cast doubt upon his hypothesis.

Secondly, the lead investigator, Mady Hornig had already endeared herself with the vaccine/autism community with a controversial mouse study on the effects of the vaccine preservative thiomersal. There never has been any thiomersal in the MMR vaccine but the anti-vaccine parents tend not to discriminate and regard all vaccines as equally bad for their children.  

Thirdly, the researchers had consulted with this constituency, described as the autism/parent advocacy community, as part of the process of study design.

This was not an establishment coverup or PR exercise. These researchers were looking to find something and wanted the parents on board. Well, they looked and found nothing. The parents jumped ship and issued stinging rebukes through their advocacy organizations  - Safe Minds and National Autism Association (NAA). I discussed this yesterday. But what of the British  press?

Over on Black Triangle, Anthony Cox had found nothing, zilch, zero   by yesterday afternoon. Then a breakthrough - a free newspaper, the Metro carried the story, followed by the Mail and the Telegraph. These are two of the newspapers that I have castigated  in the past for doing more than most to keep the vaccine scare going. And now they are leading the way with accurate reporting of some real research. Who will follow?

So far I have checked the websites of all the newspapers wth national distribution in the UK - all nine of them and the four television news services with universal coverage - free to view, no cable or satellite needed. All the other quality papers - the Times, Independent and Guardian have ignored it. The only tabloid to pick it up was the Daily Mirror. None of the TV news channels has touched it.

They must know about it so why the silence? UK media, let me hear your voice.

September 6th, 2008 Posted by Mike | MMR, journalism, research, science | 2 comments

Talk back to IACC

“requires the Interagency Autism Coordinating Committee (IACC) to develop and annually update a strategic plan for ASD research.”

As part of the process the IACC consults with members of the autism community through a number of mechanisms. Some parent advocates and one autistic person are members of the IACC . They get the chance to meet with researchers and clinicians and shape the autism agenda. There is another overlapping group the IACC Strategic Planning Workgroup and four scientific workshops.

Unfortunately, for reasons I have been unable to fathom, one of the parent advocate groups that has been involved with IACC is the anti-vaccine group Safe Minds. Lynn Redwood, Laura Bono and Mark Blaxhill have had a disproportionate voice in IACC’s workings to date. I doubt that they have been able to influence the scientists with their ideas but I am concerned that the research community is getting the wrong idea about the autism community if it thinks that these are typical representatives of us. I am also upset by the way they have operated within IACC. They make their unfounded statements in the meetings and feed them back to their media friends who report them as if IACC support them. Take this example from David Kirby.

July 15, 2008 - A workgroup report of the IACC (the Interagency Autism Coordinating Committee, which includes HHS, CDC, NIH and others) says that some members want “specific objectives on vaccine research” included in the new, multimillion-dollar national autism research program, as mandated by Congress in the Combatting Autism Act.

Notes from the meeting indicate that workgroup members want federal researchers to consider “shortfalls” in epidemiological studies cited as proof against a vaccine-autism association (by Offit, Peet, et al); as well as a specific plan “for researching vaccines as a potential cause of autism.” The workgroup also says that the final research agenda should “state that the issue is open.”

Part of the problem is that the scientists do not argue back. Perhaps they believe that autism is such a terrible affliction that they would be wrong to criticize parents. But these Sefe Minds parents are cynically abusing their politeness to pursue a political agenda and misrepresenting the scientists silence as support for their ideas.

Now we have a chance to put that right. IACC has called for public comments in a Request for Information on the Interagency Autism Coordinating Committee Draft Strategic Plan for Autism Spectrum Disorder (ASD) Research.

They include instructions on how to make you input

Responses will be accepted until September 30, 2008 via email to iacc@mail.nih.gov.  Please limit your response to two pages (approximately 1,000 words) and mark it with the RFI identifier NOT-MH-08-021 in the subject line.  You will receive an email confirmation acknowledging receipt of your response, but will not receive individualized feedback on any suggestions.  The collected information will be reviewed by the IACC, may appear in reports, and shared publicly on the IACC website: http://www.nimh.nih.gov/research-funding/scientific-meetings/recurring-meetings/iacc/index.shtml.

I suggest that it would be good for them to get as many responses as possible from anyone with  a connection to autism - autistic people and their familes, researchers and practitioners - to demonstrate the full extent of our community and show that Safe Minds is unrepresentative of our views. And you do not have to be American to respond. The US research budget for autism is massive in comparison to anything else in the world today. The direction that US research takes will influence researchers all over the world. And their findings will impact on the world autism community. We are all affected by this. We should all make our thoughts known while we have this opportunity.

Other posts on this subject include:

LeftBrainRightBrain 

Neurodiversity

AutismVox

I have no doubt that Safe Minds, Generation Rescue, NAA, TACA and all the other anti-science autism groups are mobilizing their members to comment to the IACC. It is up to us to improve the signal to noise ratio and make our voices heard.

August 21st, 2008 Posted by Mike | interagency autism coordinating committee, research, science, vaccines | 2 comments