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.

APPEALS TO EMOTION

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 AutismWeb.com 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.

APPEALS TO INTELLECT

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.

A TERRIBLE CONCLUSION

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.

 

43 thoughts on “Does language matter?

  1. This post read like a summary of the issues I’ve been blogging about this past week on Autism Vox—I had been thinking of posting about the Dawes case. I was appalled at the conclusion from the coverage about it, and the sense that what Dawes did was in any way “understandable.” Words do matter, a lot.

  2. What separates humans from animals (as much separation as there is, which isn’t much, except perhaps that humans have the unparalleled ability to wreck the planet’s ecology) is not communication, nor tool-use.

    Rather, what we have are those things we call the Humanities, things like art and music and literature. And it may be that some cetaceans make music for the sheer delight in doing so, rather than for communicative purposes. What we don’t see are representative artworks or literary works. Then again, as Sagan noted, “It is of interest to note that while some dolphins are reported to have learned English—up to fifty words used in correct context—no human being has been reported to have learned dolphinese.” Perhaps dolphins or whales have an oral storytelling tradition — who’s to know?

    Some people may claim that autistics have no sense of imagination (one of those “triad of impairment things), but I would beg to differ. Certainly Hans Asperger didn’t think so; he said that, “It seems that for success in science and art, a dash of autism is essential.” There is certainly no lack of autistic work in the various arts.

    However different humans may be from animals will likely continue to be a subject of beer-soaked late-night debates for decades to come. What is certain is that autistics do not lack for being human, and therefore, deserving of those rights as humans.

  3. What an extraordinary blog post with everything pulled together. Thank-you! You addressed some of the most imporant issues about how ASDs are perceived and discussed in society-at-large. This piece needs to be read far and wide. Thanks again.

  4. I believe you owe me an apology. I didn’t see a message board or else I would have posted there. You are not aware of my child’s circumstances and you have no way of knowing how much I have researched stuff before taking the decisions I have. You should not sit thousands of miles away and pass comments so other people can join in and indulge in the happy, yet utterly useless pastime of pronouncing aribitrary judgements on other people’s lives.

    You are welcome to speak on the subject when you are willing to come down here yourself and deal with the consequences of birth asphyxia for my child.

  5. A friend of mine called me today to tell me her son was diagnosed with ADHD. I reminded her that she still had her son, now she has an explanation of his behavior. Doesn’t change who he is.
    The problem with parent’s getting the autism diagnosis is they assume the child is defined.
    Fortunately for our family, we look past the definition and look to the child.
    How sad for any child who is considered less than his potential because he or she received the diagnosis of autism.

  6. S. Baruah,

    What are you on about?

    Mike hasn’t cast judgment on anybody for any ‘treatment options': he’s been casting judgment on the use (well, abuse really) of language by many people in the autism community (as opposed to the autistic community) on the ‘Net.

    He does not owe you a single word of apology: maybe the fact is that, now, it is you who owe him the apology for not bothering to read his piece properly before slagging him off.

    David N. Andrews MEd
    Applied Educational Psychologist
    Kotka, Finland

  7. Dear David,

    Mr.Stanton knows what I am talking about. I am reacting to another post altogether. I’ve already explained why I’m posting here at the beginning of my previous post.

  8. Oh man what a world.
    Of course words matter. Using the word ‘autistic’ as an insult is wrong. Racist, sexist and demeaning language is damaging. You’d think people would know that by now.

    And I can hardly believe what the woman who killed her son has to say to parents of disabled children;
    “I’ll continue to do the best I can for them.”
    I do not want your help Mrs Dawes. I don’t need help from child killers.

  9. SB: “Dear David, Mr.Stanton knows what I am talking about. I am reacting to another post altogether. I’ve already explained why I’m posting here at the beginning of my previous post.”

    MS: “David, S Baruah is on about my reference to a parent in India using hyperbaric oxygen therapy to prevent autism developing in her 10 month old child.”

    Well, given that there is no properly researched study on the topic of HBOT as a cure, let alone as a preventative, for autism …. I’m still not sure there’s a need for any apology from Mike.

    MS (on the linked page): “Please understand that my targets are the pseudo scientists and the quack doctors who peddle myths about autism. I have no quarrel with parents who are seeking treatment for genuine medical conditions. But if a parent thinks they can cure autism with a quack remedy I will try and correct them.”

    And I feel the same way.

    At a conference on autistic empowerment in Tampere last year, myself and Stephen Shore were asked by an Indian chap about the chelation issue, and we both cleared it up for him that it was, quite frankly, bollocks… the whole mercury-autism connection. Sad thing is that medical professionals are seen as more infallible than the Pope, and this is not even warranted by the traning they do.

  10. You still owe me that apology Mr.Stanton.When it comes to my son, we’re talking about autism-like delays that are a direct result of brain injury at birth. If anyone wants the research on the efficacy ofHBOT for treating brain injury I’ll pull out the articles for them.

    Everything I’ve done for my son is extremely well researched. I have the SPECT scans from before HBOT and I’ll be only too happy to put up the post-HBOT scans once I get them done.

    My issue with you is that your comment on my efforts to help my son was irresponsible. You need to get the facts straight. Information presented on a blog of this nature, which is accessible to several people and may influence the decisions of several parents, cannot afford to be biased.

  11. Thank you for the investment of time in developing this post. I agree with your position on this issue.

    Based upon the newspaper coverage it appears that words do matter very much in determining outcomes. Australia seems to be making more progress in the acceptance of murder than they are making in the acceptance of autistic children as valued human beings.

  12. Hey Mike, Nice blogging – as always.

    Sorry I haven’t stopped by in awhile. Sometimes raising kids gets in the way of other things. (I know I don’t have to tell you.) Just wanted to tell you that I’m still reading and learning. Thanks

  13. Long time no comment, from me, but here goes, never mind the (no I will start again)

    I think a grand compliment was paid to our Prime Minister in waiting, he will soon be a one eyed Prime Minister of a country of people who I would not wish to offend by being so politically incorrect to compare to those pour souls benighted with visual impairment (who says we can’t be ironic, or byronic, or even brassic (rhymes with lint and I am too) …)

    So what I would be rather pleased if it were not an insult but a statement of fact about Gordon Brown why should an autistic person not be involved in politics at a very high level any more than a one eyed one armed man should not command a fleet at Trafalgar.

    Larry B Arnold (BA status) yes Mr Andrews there is more than one person who can make that claim nowadays I’m doing the Masters degree now :)

  14. King Larry said: “Larry B Arnold (BA status) yes Mr Andrews there is more than one person who can make that claim nowadays I’m doing the Masters degree now”

    As I said elsewhere… I’m well pleased :)

    I seem to have set a trend. I was the first of four autistic people to do any of the autism programmes, and it was looking like I’d be one of three that were postgrads… however, glad that we can say that the four of us went into postgrad study :)

    We are just so da-a-amn good! ;)

  15. I have responded to your queries Mr.Stanton.

    http://mikestanton.wordpress.com/2006/08/28/a-letter-from-india/#comments

    I’m grateful that you spoke to me in a condescending fashion. It made me take a long hard look at my beliefs regardng HBOT and all the research I’ve taken for granted so far. I am now even more convinced about the course of action I have taken.

    You’re the expert and I’m just a mom and yet I believe my knowledge of technical terms and my understanding of research are as good as yours.

    I understand that it is very hard for you to back down from a public debate and so I fully expect you to raise increasingly unreasonable objections to the clarifications I have given you. I don’t blame you. We are all vulnerable where our egos are concerned. After all didn’t I start this argument just because mine took a hit?

    I have said before at several places that most of the debates raging within the autism community do not apply to my situation and I will also say that the use of HBOT in the treatment of autism must be validated by further controlled studies.
    However, in the meanwhile, you should not insult the intelligence of parents who seek it as a treatment alternative.

  16. Ms Baruah
    it may serve your purpose to present yourself as “just a mom” being patronized by an “expert.” But I have never claimed to be an expert. You think I have insulted your intelligence because I asked you for supporting evidence and questioned some of your assertions. How else are we supposed to have a discussion?

    And please do not patronize me by making assumptions about my motivations and accusing me in advance of being unreasonable in my responses.

    I am in this because quackery is harming autistic people. It is exacerbating the psychological harm to their families and unscrupulous people are making a lot of money out of it.

    If, as you say, “the debates raging within the autism community do not apply to my situation.” I wonder at your motivation for carrying on the argument here. You have done your research. You are certain in your beliefs and judgements. You do not need validation from a school teacher in England.

  17. First HBOT is not quackery. And the blanket statement that HBOT will not help any kind of autism is unproven. If anything there is support for the view that in some cases it may help. It doesn’t serve my purpose to make you out to be anything you didn’t purport to be .

    First you made an uncharitable reference to my treating my son. Then, you responded to my clarifications by being generally belligerent. The tone of your communication to me has been patronising and aggressive by turns. For e.g.

    “Or, there was a problem with oxygen at birth so we will give the child more oxygen now (10 months later) to repair the damage now.”

    “please do not use technical terms without knowing what they mean”.

    “Whether or not you agree (that autism can be a result of things other than genes) is beside the point. Where is your evidence?”

    Guaranteed to annoy a saint. I already told you I have researched this sufficiently before getting into it. I know my technical terms. I told you I had the research. You implied I didn’t.

    As to what my motivation is, I have explained it over and over again. When I want to disseminate information, I’ll do it where parents can see it. I won’t do it here. I know nothing about what you do and how good you’re at it. You may well be a terrific person and I’m sure your blog is useful, but you were wrong about me and you should accept that publicly just as you derided my eforts publicly.

  18. The “just a mom” was meant to be sarcasm not self-deprecation. No parent is “just a parent”. We usually know our children’s specific issues better than researchers, science writers, bogeymen, quacks, activists, some doctors, mothers, mothers-in-law, well meaning idiots and just about everyone else.

  19. Just clarifying before there is a misunderstanding, I don’t mean that any of the people mentioned is you. I only meant to say people of all kinds.

  20. S Baruah,

    The ‘neurodiverse’ mission statement is to deny/rubbish treatment to disabled kids, unless THEY think it’s OK. A little bit hypercritical, I know. They’re a little twisted in that respect.

    Ultimately, it’s your right to do as you see fit for your child. All the best with that.

  21. “Hornby, whose 13-year-old son Danny has autism, said: “George Osborne doesn’t seem to have noticed that most people over the age of eight no longer use serious and distressing disabilities as a way of taunting people.””

    “The National Autistic Society agreed with Mr Hornby and said any perceived use of autism as a term to mock someone could cause “deep distress”.

    Carol Evans, a director of the charity, said: “Any pejorative use of terms relating to autism can cause deep distress and hurt to people affected by the condition.

    “We as a charity are keen to raise awareness in order that these terms are not used lightly by commentators.

    “To use such terms as a criticism of someone’s social skills only perpetuates the confusion that surrounds the condition.””

    “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…”

    The NAS don’t consider it to be a feeble reference Mike. Hmmm..!
    I wonder if your comments above, ‘sit well’ with them?

  22. “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…”

    The NAS don’t consider it to be a feeble reference Mike. Hmmm..!I wonder if your comments above, ’sit well’ with them?

    Well, Kevin, why don’t you ask them?

  23. “Hornby, whose 13-year-old son Danny has autism, said: “George Osborne doesn’t seem to have noticed that most people over the age of eight no longer use serious and distressing disabilities as a way of taunting people.””

    Oh, I don’t know. I’ve noticed some people over the age of eight mocking autistic people, saying they shouldn’t be listened to because “their minds don’t work right,” and making fun of them for not being “cured.”

    Haven’t you noticed this, Kevin_1000? And do you agree with Carol Evans that this ridiculing of autistic people can cause them deep distress and hurt?

  24. Anne,

    Of course I agree with Carol Evans, even if Mr Stanton doesn’t share the same sentiment.

    It works both ways. A lot of ‘autistic’ people have been guilty of what you suggest too.

    My son is autistic. I have the utmost respect for autistics.

    It all comes down to human rights. Parents of autistic children have a duty to ensure they recieve the same rights as everyone else, in all aspects of life.

  25. Kevin said
    Of course I agree with Carol Evans, even if Mr Stanton doesn’t share the same sentiment.
    Did you follow the link to my blog on Political Autism where I wrote
    Imagine using any other disability as a pejorative explanation of politics. Alzheimers, Schizophrenia anybody? If, like me you are tired of journalists using autism as a metaphor for whatever incompetency they are currently writing about please complain to the Sunday Times.
    Osborne’s off the cuff remark was feeble compared to some of the nonsense written this year that used autism as a metaphor for political failure. It provoked the response it did because it was broadcast on TV instead of being published in a ‘serious’ newspaper.
    Kevin wrote
    It works both ways. A lot of ‘autistic’ people have been guilty of what you suggest too.
    ?? Please furnish examples of autistic people “mocking autistic people, saying they shouldn’t be listened to because “their minds don’t work right,” and making fun of them for not being “cured.””
    Kevin wrote
    My son is autistic. I have the utmost respect for autistics.
    It all comes down to human rights. Parents of autistic children have a duty to ensure they recieve the same rights as everyone else, in all aspects of life.

    Does that include the right to be accepted as an autistic person?

  26. Mike,

    “Osborne’s off the cuff remark was feeble compared to some of the nonsense written this year that used autism as a metaphor for political failure.”

    Like I said, we don’t share the same sentiment.

    “?? Please furnish examples of autistic people “mocking autistic people, saying they shouldn’t be listened to because “their minds don’t work right,” and making fun of them for not being “cured.”””

    The reference was to ‘mocking’, not to exactly what was said. What goes around comes around.

    “Does that include the right to be accepted as an autistic person? ”

    Of course.

  27. Mike: “Does that include the right to be accepted as an autistic person? ”

    Kevin_1000: “Of course.”

    Except that John Best doesn’t think so.

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