Does language matter?

  1. Mike Fitzpatrick has written another provocative article for Spiked Online in the wake of the recent contoversy about autism as a term of political abuse/analysis. The article begins:

The description of Labour’s heir apparent Gordon Brown as ‘slightly autistic’ by shadow chancellor George Osborne has provoked protests from self-appointed defenders of the feelings of families affected by autism (1). But what is really offensive to us is the lack of appropriate services, particularly for those most severely affected.

I agree with Mike that George Osborne’s rather feeble reference to George Brown’s so called “autism” has provoked rather more furore than it merits especially when compared to the far more substantial attack on Brown in a recent article in the Observer that I blogged as Political Autism? And he is right to point out that autism is merely the latest in a long list of terms associated with all sorts of disabilities that have entered the lexicon of political abuse.

I also agree that if people put as much effort into providing necessary services as they put into policing our language we would all be a lot better off. Mike provides a useful reminder of the way that the terminology of mental handicap has changed over the years with previously accepted terms being rejected as being too harsh while little has been done to improve the actual quality of life of the people being labelled.

But there was one sentence in his piece that reminded me of just how important and powerful language can be.

Idiots were sometimes described as ‘cretins’, derived from the French for ‘Christian’, indicating that they were regarded as ‘still Christian’, still human beings (this term was also more specifically applied to those suffering from congenital thyroid deficiency).

So, all those years ago, our less knowledgeable forbears made a point of reminding themselves that the most disabled individuals still retained their humanity. Compare this with some of the language used today to describe autistic people which suggests that they are less than human. As Autism Diva puts it:

On the AWARES conference site where Dr. Herbert was recently taking questions about her neuroimmunology review paper, a poster pointed out that a mercury mom had called her child a “toxic train wreck” on an Internet bulletin board. The AWARES conference commenter saw this “toxic train wreck” comment as toxic fall-out of the “autism as toxicity” rhetoric Dr. Herbert and her friends throw around carelessly. Dr. Herbert responded as if she couldn’t imagine how anyone would be harmed by being called, “toxic.”

This is why there is still uproar about the “off-label” uses of autism in the political arena. There are unresolved disputes about what the label really means and many of us are approaching those same politicians to argue for them to accept our definition of autism and commit themselves to providing the type of resources that follow from that definition.


Those who believe that autism makes someone less than human often talk about it having stolen the child’s soul. Any therapy is worth the risk if it can restore the child because the alternative is a life not worth living. Or the child is reduced to an empty shell and you have to recreate the child you lost using intensive behavioural interventions. Or the child is trapped inside the shell and you have to tear the autism apart, to break through to your child and rescue him or her.

However formulated, this view of autism sees normalization as the only outcome worth pursuing. If you take this point of view where does that leave those autistic people who have come to some accommodation with society and have no wish to be rescued, recovered, or have their autism removed? There seem to be two responses.

1. Such people are not really autistic because they are not screaming, incontinent, non-verbal and self injurious. Therefore they can be ignored.

2. Actually some were and some still are. But that is another reason to ignore them. Because if they are really autistic they lack the empathy to understand the suffering that autism brings to others.

If you think this is an extreme and unfair representation of the views of some parents, think again. Try this “discussion” on in which Michelle Dawson is currently being calumnied. Her diagnosis, her sanity, her morality, her right to speak at all are being questioned because she has dared to deny that ABA is a necessary medical treatment for autism. She has promoted the idea that autism is not bad but different and brings strengths which are ignored by traditional science. Oh, and if you are tempted to defend Michelle on this particular forum, be prepared to stand accused of being one of her “minions.” Michelle’s immense contribution to the ideas of autism acceptance and neurodiversity can be seen at her website, No Autistics Allowed. For a brief introduction try the Quarks and Quirks radio interview with her.

Estee Klar has received hate mail from parents following publication of this article in the National Post in which she supports autism acceptance and neurodiversity. Readers who wish to express their support for Estee can send letters to the editor or or add their comments to her Joy of Autism blog.

At this point I suppose I ought to issue the usual caveat about recognizing the disabling aspects of autism and not wanting to deny services to autistic people. But people like David Vardy of the Autism Society of Canada would not listen anyway. He thinks “Autism is worse than cancer in many ways, because the person with autism has a normal lifespan.”

So instead I will reiterate that:

Autistic People are human beings with human rights that are not predicated upon whether or not they or their parents are seeking to normalize their condition and trying to eradicate all traces of their autism. These rights include the provision of accommodations that are necessary to maximize their ability to benefit from participation in society.


Not everyone who seems to deny the basic humanity of the autistic is a parent locked into a psychological moment of grief, unable to move beyond the prior hopes and expectations they held for their autistic child. Professionals in the field of neurology and psychology have long tried to find a defining characteristic that marks us out from the rest of the animal kingdom and defines our humanity. This is not an idle exercise. There are serious ethical questions surrounding the use of our closest relatives, the great apes, in medical research, particularly around AIDS. If we cannot find a point of separation are we justified in continuing to use them in this way? One point of separation is our superior brains and our power of thought.

Nowadays this comforting superiority is challenged by robots and computers that can outperform us. Does research into artificial intelligence serve us or threaten us? Stephen Pinker provides one answer that seems to get us off the hook regarding both apes and computers. Unfortunately, it also seems to oust autistics from the human race.

Autism is an innate neurological condition with strong genetic roots. Together with robots and chimpanzees. people with autism remind us that cultural learning is possible only because neurologically normal people have innate equipment to accomplish it.

My thanks to Larry Arnold for blogging this. Stephen Pinker is a friend and admirer of Simon Baron-Cohen, a leading figure in autism research. I do not know the extent of their influence on each other’s thought. But Larry makes a persuasive argument for the influence of Baron-Cohen, in particular his 1995 work, “Mindblindness, an Essay on Autism and Theory of Mind.” In an earlier book, “How the Mind Works” (Penguin 1999) Pinker discusses autism in terms that suggest he does not automatically regarded autistic minds as inferior to “normal” ones. But they are less human and more machine like.

When I turned to Stephen Rose, a long time intellectual adversary of Stephen Pinker and author of “The 21st century Brain” (Vintage 2007) he also seems to adhere to the “autism as not quite human” hypothesis.

Smiling is thus part of the ongoing development of communicative and social skills that are an essential part of becoming human. It is just these skills that are lacking in autistic children …

… Whatever its genetic origins, autism is essentially a developmental defect affecting a child’s ability to communicate, resulting in turn in a failure in interaction between child and caregiver. ” (page 136)

Rose goes on to cite Peter Hobson’s view that this is a failure of an

interaction [that] is indeed ‘the cradle of thought’ central for the growing child to develop a sense of self, consciousness and a theory of mind. (page 136)

Temple Grandin, in her book, “Animals in Translation” (Bloomsbury 2005) takes a different viewpoint. She suggests that autistics can be better understood in comparison to animals rather than computers. She leans heavily on the work of Dr Irene Pepperberg to show that characteristics to do with concept formation and language development, that were hitherto regarded as uniquely human, can be found, or at least taught, to animals as diverse as parrots and dolphins. Does this mean that autistics can also be taught to be human?

These are big ideas and somebody ought to write book about them and include the idea of autism as a variety of humanity and not as deviation from humanity. I have a working title, Animaux, Chretiens ou Ordinateurs? Autism in Translation.


This is a long way from Mike Fitzpatrick’s original article. But I would like to return to his opening premise that services matter more than words. Most times they do. But sometimes getting the language right is more important than getting the services. Take this recent newspaper report from Australia. Mrs Dawes killed her autistic child then tried to kill herself. Instead of being imprisoned or sent to a mental institution she is somehow a hero, a campaigner for parents suffering like herself! The coroner said:

“I have seen the devastating effect Jason’s disability has had on the Dawes family. Perhaps professional, timely and appropriate resourcing at an early stage may have avoided many of those outcomes.”

Mrs Dawes said she hoped the recommendations would be adopted.

“This is by no means the end of the process. It’s only the beginning for parents out there suffering, so I’ll continue to do the best I can for them,” she said.

“Parents with disabled children do suffer depression and there is a strong possibility that this tragedy could happen again.”

I am sorry but this is not on. I have no desire to disrespect the memory of Jason Dawes but I am inevitably reminded of the scene in Blazing Saddles when Bart (Cleavon Little) confronts the townsfolk with the words

Hold it! Next man makes a move, the nigger gets it!

He of course had no intention of killing himself. He was calculating on the credulity of the crowd. He was bluffing and it worked.

Whatever their personal demons, parents like Mrs Dawes are not bluffing. For the coronor to imply that her crime strengthens the case for services is tantamount to justifying Jason’s death. He might as well have said:

Hold it! Give us the services or the kids get it!

This is not even remotely funny. It is not even tragic. It is criminal.


NIMH Chelation Study

Two weeks ago I wrote to Karin Lee at the National Institute for Mental Health (NIMH) press office after reading a press release that said that NIMH was going to conduct a trial to see if chelation therapy improved the behaviour of autistic children.

I asked what I thought was an obvious question.

Can you point me to any published research that demonstrates that autistic children do have elevated levels of heavy metals in their blood?

I wanted to know if NIMH had any evidence that blood levels of mercury are higher in autistic children than their neurotypical(NT) peers. To judge from Karin’s reply, NIMH do not have any evidence. Instead of giving me references Karin suggested that I

conduct a search on PubMed, a service of the National Library of Medicine. To access PubMed go to the Web site and type your topic in the search field.

Thank you Karin. I do know how to search PubMed. I found a recent study that showed no difference between mercury levels in autistic and NT children. I found another study that gave reference values for mercury in the blood of children as 1 microgram per litre (1 microgram =1 millionth of a gram) and for lead as 50 micrograms per litre. Karin also refered me to a more detailed description of the clinical trial. This contains the following inclusion criteria.

  • Male or female subjects, four to ten years of age.
  • Meets research criteria for ASD (specifically, autism, Asperger Disorder, or Pervasive Developmental Disorder – Not Otherwise Specified).
  • Detectable (greater than 0.1 microgram per deciliter) levels of blood lead and/or blood mercury.
  • Each legal guardian must have a level of understanding sufficient to agree to all required tests and examinations. Each legal guardian must understand the nature of the study and must provide written consent to study protocol.

Note the figure for levels of lead or mercury is equivalent to the reference figure for mercury of one microgram per litre and way below the reference point for lead. These levels are so tiny that everybody has them. Here are the exclusion criteria.

  • History of allergic reaction to sulfur or thiol-containing substances
  • History of previous chelation therapy for autism
  • History of uncontrolled epilepsy
  • Weight less than 15 kg at screening
  • Presence of a chronic medical condition that might interfere with study participation or where study participation would be contraindicated or clinically significant abnormal baseline laboratory results.
  • Level of lead above 10 microgram per d, or Level of mercury over 44 microgram per deciliter (toxic levels which require intervention with chelation and preclude placebo assignment) or other evidence of heavy metal toxicity.
  • Recent (less than two months prior to study entry) initiation of behavior therapy

Note that autistic children with heavy metal poisoning are not eligible for this study. They need treatment and it would be unthinkable to put them on a placebo. But this means that to be eligible for a study in which you may be treated for heavy metal poisoning you must be completely healthy and not have heavy metal poisoning.

Autistic children with traces of heavy metals in their blood that are no different from the levels in NT children are going to be subject to unnecessary medical treatment to see if it alters their behaviour. Well, it would certainly alter mine!

I wonder why they are only recruiting autistic children? Perhaps NT children with the same reference levels of mercury would also benefit from a dose of chelation therapy. But what self respecting parent of a healthy child would submit their child to that? And that goes for the parents of healthy autistic children as well.

I am guessing that NIMH will only attract parents who believe their child is sick. They believe their child is mercury poisoned. NIMH will have to have a very good screening programme to exclude parents who have already tried chelation on their child. I am guessing that, even then, they will only attract parents who are already using other biomedical interventions. There is nothing in the description of the clinical trial that takes account of any of the other possible confounds arising from unorthodox biomedical interventions.

There is a final ethical consideration I would like to raise.

Parents approach DAN! practitioners with a false belief about their child’s health, seeking treatment for that child. The DAN! practitioner shares their belief and provides the treatment.

Parents approach a NIMH doctor with a false belief about their child’s health, seeking treatment for that child. The NIMH doctor does not share their belief. In fact they have to establish that the child is not ill. But they still provide the treatment requested by the parent.

Who has made a moral decision here; the DAN! practitioner or the NIMH doctor?