A tale of two autisms

The Sunday Times has published a thoughtful piece on autism by Mark Henderson, entitled ‘We ask ourselves, can we separate Alex and autism?’ 

Alex is 12 years old and described as being “at the less extreme end of the autistic spectrum.” This was not always the case. He regressed when he was 14 months old, losing speech and becoming so withdrawn that nursery staff thought he was deaf. Reading his mother’s description of his early years Alex’s autism is plain to see. But he had to wait til he was 5 to get a diagnosis. Julia, his mum, would welcome improvements in genetic screening if it meant that children like Alex did not have to wait so long for a diagnosis but some of her worries chime with those raised by Dr Russell that are discussed on my previous blog.

“It took an age to get Alex the help he needed,” she said. “The earlier you know, the better, and if this could help us identify autism as young as possible it would be wonderful.

“But I would not want a situation like Down’s syndrome, where you tell parents while the child’s in the womb and you have to make a decision.

“We also ask ourselves how much of Alex’s personality is Alex, and how much is the autism. Can we even separate the two?

“If you asked us could we have prevented it, we would have to think. Obviously in some ways it would be better for him, but he is happy in himself.”

Questions like these are bound to come up more often as advances in genetic research offer the prospect of earlier diagnosis and even the possibility of prevention or cure. Whether or not these possibilities ever materialize is not the point. But they are undoubtedly powerful levers for releasing the massive funds that genetic research consumes.

[NB. research costs may be massive in relation to the biological sciences. But they are still small by comparison to the costs incurred in particle physics.  The Large Hadron Collider at Cern is costing in excess of 4 thousand million USD. Michael Wigler at Cold Springs Harbor has a budget of 14 million USD for his research programme into autism.]

The hype that surrounds genetic research is often encouraged by scientists eager to claim their portion of the research pie. This makes it even more important that journalists approach the topic dispassionately and are sensible to the dangers that Dr Russell raised in her article for Communication.

So it was a pity to read Mark Henderson’s latest offering in the Times, Hunting the gene that traps children in their own world which proclaims that

Parents and scientists are hoping that a new detailed analysis based on human genome will bring a big breakthrough within a year.

in the space of 4 paragraphs we get the following [emphasis added]

one of the most controversial and feared medical diagnoses of modern times

but it prompted thousands of parents to agonise over the cruel condition that seems to leave children walled off in a social and emotional world of their own, apparently beyond their love.

A disorder that was once rare has become alarmingly common,

the condition retains a brutal mystery.

This is exactly the sort of language that fuels fears about autism. It suggests that research into the prevention and cure of autism is almost an obligation. Those of us who argue for autism acceptance are accused of wishing a nightmare disorder on children. But children like Alex know happiness. They are not beyond love. They have a future. Or at least they might have a future if they are seen as people who can prosper with help and understanding, rather than the victims of a brutal mystery, at best to pitied, at worst to be feared.

All this is merely the preamble to a story about some research that is not even finished yet!

Within the next year a new study is expected to identify many of the genes that underlie autism for the first time.

I am always suspicious of claims made for a study that is still in progress. This is hype. And we have heard it many times before.  My thanks to Michelle Dawson for reminding me that in February, 2004  Thomas Insel of the NIMH said this about autism in the New York Times

“My sense is that we are close to the tipping point in this illness, and that over the next couple of years we will have, not all of the genes, but many of the genes that contribute.”

Funnily enough, we are at the same tipping point three and a half years later.

The medics tell me we are at a tipping point,” said Dame Stephanie Shirley, the millionaire computer entrepreneur and philanthropist, who is the chairman of the research charity Autism Speaks and the mother of an autistic son.

My guess is that researchers always feel as though they are on the brink of a fantastic new discovery. That is what sustains them through the painstaking daily grind at the lab bench or crunching data in front of a computer screen.  But the rest of us would rather wait for the results before we get too excited.

The article ends with another quote from Dame Shirley.

“It is quite possible that in five to ten years, we will have a real understanding of this disorder,” she said. “That’s a timescale that means today’s children may be helped.”  

I am sure that Dame Shirley is already doing a lot to help her autistic son. But genetics is the science de jour. There is a popular belief that all behaviour is the product of specific brain areas that in turn are the product of the DNA code carried in our genes. Unlock the genetic code that governs our brains and we can manage our minds. We have been here before.

Once upon a time psychoanalysis was supposed to have all the answers. It gave way to behavioural science. New brain scanning technology marked the rise of cognitive neuroscience. Genetics is currently in the ascendency. Will it prove more productive than previous paradigms or do we need a new way of trying to grasp the reality of what it means to be human, maybe one that includes autism rather than trying to eliminate it? It is significant that all the genetic research so far has tried to identify genes associated with the deficits and impairments associated with autism. Nobody to my knowledge is trying to identify the genes responsible for the autistic strengths identified by researchers like Mottron and Gernsbacher.

I do not have a crystal ball. For what it is worth, in my opinion genetic research will expand our knowledge and our understanding. But it will not lead to any sort of a cure or an end to autism. Given our current level of knowledge that is probably for the best.

Full Spectrum Resistance

There are a number of stock phrases that appear in media reports on autism with annoying regularity, phrases like:

• autism epidemic;
• this devastating disorder;
• the fastest growing developmental disorder.

They annoy me because they express ideas about autism that are either disputed or unproven. But their constant repetition leads them to be accepted as statements of fact. There are no epidemiological studies that demonstrate the existence of an epidemic. Indeed, there are good reasons not to believe in an autism epidemic. It only appears to be growing so fast if you include all the “mildly affected” (another annoying phrase) people who would not have been diagnosed 25 years ago when autism was considered a narrow disorder rather than today’s broad syndrome.

And who is devastated by autism? Is it the parents or their autistic children? And why are they devastated? Could it be the lack of services or the exclusion clauses in their health insurance that put those services out of reach? Some of us are devastated by the time, effort and money expended on debunking myths about vaccine induced epidemics and their corollary, the efforts to counter environmental theories of causation by finding genetic causes for autism.  We would prefer the money to be spent providing those services that have proven beneficial. For example

In cases of severe autism, for example, Attwood says: “When I started in the area 30 years ago, only 50 per cent acquired speech. Today, only 15 per cent don’t acquire speech.”

How many speech therapists could you buy with the £15 million of public money spent on the abortive anti-MMR litigation in the UK or the millions of dollars expended on the Omnibus autism proceedings in the USA? These proceedings are also on the brink of collapse unless the litigants can find three typical cases to come forward from the 4,500 at their disposal. Their prospects of  success appear to be diminishing.

Californian politician Rick Rollens is a fervent advocate for the link between vaccines and autism. He is also responsible for one of the most annoying media catch-all phrases, “full syndrome autism.” He means autistic disorder. But “full syndrome autism” deliberately suggests “worst case autism.” Rollens invites us to take all the negative aspects of autism and imagine them in a single child. He goes on to suggest that the year on year increases in the autistic caseload of the California Department of Developmental Services (CDDS) represents an epidemic of this worst case autism that is devastating the lives of children.

Jonathon has provided a consistent critique of Rollens’ use and abuse of CDDS statistics. Autism Diva has cast light on his bullying tactics.

Autism Diva sat across a table from Rick Rollens last year as Rollens accused a reputable scientist of being on the take, because that scientist had written things that tended to discount Rollens’ (dead) pet hypothesis of THE EPIDEMIC OF AUTISM. The scientist in question was not in the room and so couldn’t defend him or herself.

Whether he is wilfully ignorant and rude or just plain stupid, Rollen’s invention of full syndrome autism is now part of the language. An additional annoyance for me is that his kind of misinformation and pandering to prejudice always seem to lend itself to simplistic language that registers in the popular imagination, while rational rebuttals and refutations of this sort of nonsense appear counter-intuitive and long-winded.  To paraphrase William Booth, “Why should the devil have all the best slogans?”

 So imagine my delight when I came across the slogan, Full Spectrum Resistance.

 

 I really like the idea of countering “Full Syndrome Autism” with “Full Spectrum Resistance.” I found that slogan in a brochure for Marxism 2007, A Festival of Resistance. Marxism is an annual event in London that provides a platform for left wing thinkers and activists from round the world.

In the past Marxism has featured one of my favourite neuroscientists, Steven Rose. He will not be speaking this year. But his ideas about evolution, genes and human nature have had a persuasive influence on me. One of the few benefits of long distance air travel is that it gives you time to read. On a recent round trip to New Zealand I devoured two of Rose’s books, Lifelines and The 21st Century Brain. In Lifelines he argues against the overly deterministic theories encapsulated by Dawkin’s The Selfish Gene. His answer is to place the organism at the centre and explore the complexity of life. Genes play their part but do not determine the outcome. The subtitle Life Beyond Genes is an apposite summary of the book

The 21st Century Brain is equally good at tackling the reductionist tendencies in neuroscience and reasserting the conscious self as an active agent in the world against a vision which sees,

Human agency … reduced to an alphabet soup of As, Cs, Gs and Ts in sequences patterned by the selective force of evolution. whilst consciousness becomes some sort of dimmer switch controllng the flickering lights of neuronal activity. Humans are simply somewhat more complex thermostats fashioned out of carbon chemistry. [page 297]

This book is subtitled Explaining, Mending and Manipulating the Mind, which seems to summarize the aim of a lot of autism research. Unfortunately most of it follows the reductionist trend which Rose ascribes to the fact that many of those working in the biological sciences aspire to the mathematical precision and predictability of physics. He, on te other hand. positively revels in the “fuzzy way of thinking” or more formally the “epistomological pluralism ” that he deems essential if we are to embrace the complexities of life.

Language, culture and autism

Mike Danatos left this interesting comment on one of my pages. I decided to blog it because it deserves a wider circulation.

I am currently a Grad Student in an ABA program at Rutgers University. I am interested in pursuing doctoral research on autism. My review of the current understanding of autism depicts a clearly Anglo-centric view derived from research and interventions that have historically been based in either the United States or Western Europe.

Two of the DSM-IV criteria (social, language) are likely to evidence significant variability in the non-Anglo world. Uta Frith reports in her research that it is not surprising that children with autism “confuse deictic terms and even personal pronouns.” Does this observation apply only to children whose ‘natural’ language is English? Does the confusion change with an arguably more complex language such as Portuguese?

A genetic study of autism in Costa Rica reported that one of the major hurdles to overcome was that the standard research instruments (ADI-R, and ADOS) were only available in English and were unlikely to be translated by the intellectual property owners because of a perceived lack of market to repay their investment. A similar problem exists for IQ tests where no norms exist for Latin American countries.

An unprecedented amount of money has been spent in the last decade on Anglo-centric autism research including more than $100 million in 2006. A new study to understand autism in the non-Anglo world has recently begun yet the research is limited to countries on the Asian continent. There is currently a dearth of research on autism from a Latin American perspective and this is a huge gap in knowledge.

The importance of this gap can be brought into clearer focus by consideration of the tens of billions of dollars that are spent in the US annually on ‘special education’, the increasing proportion of students from Hispanic origins in the public school system and the unfortunate prevalence of significant misdiagnosis of special education needs of minority students.

I would be very interested in hearing thoughts, opinions, diatribes, etc on this issue.

So would I.  Is there any research into how different mother tongues might affect the presentation of the language difficulties in autism? As an example, I do not know if such a language exists, but you could not have pronoun reversal in a language that had no personal pronouns.Social and cultural aspects of autism including, but not restricted to language differences, are potentially as important as the genetic and medical aspects that get most of the attention. Roy Grinker, in his new book, Unstrange Minds, looks at autism as a world wide phenomena and includes an extensive section on Korea, where Reactive Affective Disorder, which is essentially blamed on bad parenting, is actually preferred as a diagnosis over autism. An interview with the Guardian reported that,

In such a setting, reactive attachment disorder is a popular diagnosis, Grinker believes, because the condition simply blames the mother: That’s the more culturally appropriate diagnosis, you see, because it means there’s just this one person – the mother – who’s to blame.”

The alternative, to admit to a genetic element, would bring shame on all the family. This may be a factor affecting the perception of autism in other communities were family traditions are strong and women traditionally have a subordinate role. This excerpt from Roy Grinker’s website shows how serious the problem is. And also how things are changing for he better.

Milal School. This is a wonderful school for children with autism called Milal School in an area of Seoul called Ilwon-dong. For me, it is a symbol of how things are changing for the better in Korea. When it was being built in the mid-1990s, some of the wealthy residents of this quiet neighborhood south of the Kangnam River in Seoul picketed the site, cut the school’s phone lines, physically assaulted school administrators, and filed a lawsuit to halt construction, because they believed that the presence in the neighborhood of children with disabilities would lower property values. The school opened in 1997, but only with a compromise. It was required to alter its architecture so that the children were completely hidden from public view. Some of the protestors were brutally honest. They said they didn’t want their children to see or meet a child with autism. Today, the Milal school is a jewel in the Ilwon-dong neighborhood where hundreds of neighbors volunteer. The architect was given an award for the building. And the gym is used for community events, such as concerts and church services. In the afternoon, when school lets out, families come by to pick up their children and sometimes take a leisurely walk in the neighborhood, for all to see. 

Cultural differences may be a factor in other aspects of autism research. When I attended the NAS International Conference in London two years ago a delegate from South Africa pointed out that nearly all of the genetic research was based on North American and European data with virtually no input from the southern hemisphere.

More recently, supporters of the link between vaccines and autism have tried to cast doubts on the validity of research by Eric Fombonne that demonstrated no connection between MMR and autism. They did this because he combined data on autism from anglophone districts of Canada with data on vaccines from francophone districts. There is a full discussion of the critique of Fombonne’s study at Interverbal; Reviews of Autism Statements and Research.

While it is extremely unlikely that language differences affect reactions to the MMR vaccine could cultural differences impact upon the diagnosis levels in francophone and anglophone parts of Canada? This is not an idle question. Autisme Europe won a case against France before the European Commitee of Social Rights in Strasbourg, in part because the cultural dominance of psychodynamic theory in France was instrumental in denying French autistic children an appropriate education. Could such a bias affect francophone communities around the world? It is worth noting that Fombonne is a French psychiatrist who does not adhere to psychodynamic theories of autism.

So, thank you, Michael Danatos. Your question raises all sorts of interesting possibilities.