Political abuse and the abuse of autism
“Political autism” has emerged again in a row within the European Union (EU). Despite taking Britain into the EEC (the forerunner of the EU) in 1973, the Conservatives have always been vulnerable to disputes between their pro-European wing and the euro-sceptics who are mistrustful of European federalism and keen to defend British independence. The Labour Party has comparable factions within its ranks.
Thus political leaders of both the main parties have always had to perform a tricky manoeuvre, demonstrating their European credentials to a business community that knows where its markets lie and appealing to an electorate, many of whom prefer to blame faceless European bureaucrats for all our ills. This has led to an inconsistent approach that causes exasperation amongst some of our European partners.
This came to a head again this week over the lack of commitment by the Conservative Party leadership to the European Union. According to the Guardian
Pierre Lellouche, France’s Europe minister, described as “pathetic” the Tories’ EU plans announced today, warning they would not succeed “for a minute”.
Giving vent to frustration across the EU, which has so far only been expressed in private, Lellouche – who said he was reflecting Nicolas Sarkozy’s “sadness and regret” – accused William Hague, the shadow foreign secretary, of a “bizarre autism” in their discussions.
He said: “They have one line and they just repeat one line. It is a very bizarre sense of autism.”
This is not the first time autism has been used as a term of abuse in politics. But the National Autistic Society launched an immediate complaint
Autism (including Asperger syndrome) is a serious, lifelong and disabling condition. Comments such as those attributed to Pierre Lellouche, France’s Europe Minister, in which he seemingly suggests the Conservative Party, and in particular, William Hague, demonstrate a bizarre sense of autism are therefore extremely unhelpful.
To use the terms ‘autism’ and ‘autistic’ in a derogatory or flippant manner can cause deep distress and hurt to people affected by the condition. The National Autistic Society (NAS) is keen to address this issue, in order that these terms are not used lightly, particularly by commentators or people in positions of power or influence.
Autism is much more common than most people think and affects over half a million people in the UK. To use the terms as a criticism, for dramatic effect or to try and gain political advantage only perpetuates the confusion and misunderstanding which people with autism have to cope with everyday. This is simply unacceptable and must stop.
Today’s Times ran with the story of Monsieur Lellouche’s apology.
France’s Europe Minister has expressed his deep regret at causing offence by calling the Conservative Party “autistic”, but also blamed a mis-translation for the furore today.
Pierre Lellouche said that he was voicing his real concern about the Tories’ Eurosceptic slide under David Cameron when he reproached the party for “a very bizarre sense of autism” in an interview with The Guardian.
He also called their hostility to the European Union “pathetic” and said that the party’s policies in the European Parliament had “castrated” them. Aside from the political row, the remarks were condemned by autism advocacy groups.
However, although the minister said today his remarks were “clumsy”, he claimed that the term, which is colloquially used in French to refer to a stubborn person who does not listen, is a common term of political abuse in France.
Leaving politics aside, this derogatory use of autism reflects some very primitive and harmful ideas that still hold sway in France. Two years ago I wrote about an abusive “treatment” known as “packing” that is still going on today
“A French treatment for autistic children with psychiatric problems which involves wrapping the patient in cold, wet sheets from head to foot is undergoing a clinical trial for the first time, which critics hope will see an end to the controversial practice.
The treatment, known as “packing”, involves wrapping a child in wet, refrigerated sheets in order to produce a feeling of bodily limitation and holding, before psychiatrically trained staff talk to the child about their feelings. Critics have called the procedure cruel, unproven and potentially dangerous, but its proponents say they have seen results.”
This cruel treatment has been condemned by advocates for neurodiversity and proponents of biomedical cures alike. I have made my feelings regarding Lorene Amet’s position on vaccines and biomedical treatments perfectly clear hereand, more recently, here. But I agree with her that Packing is barbaric.
It is time that the French medical and educational systems came to grips with the reality of today’s autism. Placing autistic children in hospitals, under psychiatric surveillance, refusing their inclusion in proper educational systems, refusing their access to medical examination
and treatments, violating their human rights and dignity, and even worse still allowing interventions such as “packing” to be conducted in hospital settings is unhelpful and has to be stopped.
According to the Times French autism organizations have welcomed the NAS response and are equally condemnatory of the casual use of autism as a term of political abuse in France.
French autism groups said that the affair demonstrated how offensive was the current use of the term in French public discourse.
Patrick Sadoun, a member of the Sesame Autism Association, said: “The English are right to be shocked. I congratulate a country that reacts to this. I am horrified that French politicians, at the slightest occasion, call one another autistic.”
While autism is an acceptable term of abuse autistic people continue to be the victims of unacceptable physical and psychological abuse.
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Comment by Laurentius Rex | November 5th, 2009
The fact that it is a common term of abuse in France does not excuse it at all.
However I am not personally greatly offended, just dissapointed.
Comment by Lorene Amet | November 6th, 2009
May I comment on Lelouche’s use of the autism word? In my opinion, it is unlikely to be a Freudian slip, or a mistranslation of meaning. Rather, it shows how autism is being perceived deep down in the French culture; let me explain here my views. I am quite happy to criticise my own country as far as its dealing with autism is concerned because what happens in France is a truly appalling situation. The French national motto “Liberty, equality, fraternity (brotherhood)”, does not apply today towards autistic and disabled people. On surface however, there is a profound interest for people who struggles, are disadvantaged socially, people with tortured minds, scored to the bones with passion, artists, free thinkers, but this interest is only academic, and as long as it adds value to the country, institution or family concerned. But when it comes to dealing with real people, real challenges, especially when behaviour and mind are involved, there is a profound disdain, avoidance and general uneasiness amongst people. They turn their back, don’t want to see the issues, don’t want to give a hand. We can see this throughout the layers of the society, all the way down to the very core of families, with some exception of course. In addition, there is still a heavy influence of psychoanalytic concepts that blurred the issues in terms of causality and dealings. We end up with legalised criminal situations such as the packing therapy, which you are referring to, but also excessively limited opportunities for individuals to be integrated in the society and in an education system, and limited governmental financial support. Most of my French friends who have an autistic child have no choice but to place them in hospital settings for education, and rarely education is being provided. It’s a lot more like a big crèche. There are a few exceptions, when dedicated and educated parents have to pay for an assistant to assist the child in class in order to give him or her the opportunity to integrate to a mainstream education. Sometimes, even the parent has to be in school with the child, and usually it also implies to complement without further assistance this school education by many more hours of home education. We also have a huge number of institutional settings, in which the main mean of dealing with individuals is heavy medication. I don’t believe any findings from research conducted in France with adults. They are all on drugs and generally very badly treated, and there is no control for the consequences these treatments will have on their brain function and well-being, yet it is claimed that the findings relate to autism. On the other hand, the healthcare situation is somewhat better than in the UK, though this is not specifically towards autism, it just is generally better; more preventive medicine, more monitoring, a lot more investigations conducted when someone is unwell, even when he has autism. No shying away from looking at the co-morbid health issues there, but there is still a long way to go to a perfect health system.
Comment by Laurentius Rex | November 6th, 2009
It is also interesting that so far as I am aware there is no movement of autistic adults in France, challenging the system so far as I am aware, nor anything really equivalent to the NAS.
The Nordic countries, and Benelux seem to be further ahead in this respect, with movements in Sweden, Finland, Belgium and Holland (Though I am sure David Andrews might want to argue about impact in Finland)
The irony is that France in terms of the EU is as isolationist as the UK anything is Ok so long as it does not apply to France, the lessons of Ta Geulle (sic) should not be forgotten.
Comment by Socrates (deceased) | November 6th, 2009
What about our own Reverend Bullingdon, Boris Johnson – Mayor of London?
“How can they pretend that the world hasn’t changed? What blindness, what deafness, what Asperger’s afflicts them? The banking sector now stands in a completely different relation to the wider public. Their interests, and the interests of the community, have been intertwined by the fact of state intervention, and they need to show they understand that.”
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Comment by Stephanie | November 6th, 2009
First he “blamed a mis-translation for the furore today.”
Then “he claimed that the term, which is colloquially used in French to refer to a stubborn person who does not listen, is a common term of political abuse in France.”
That’s not a mis-translation. That’s highlighting a very inappropriate practice that’s apparently acceptable in France. He definitely meant to offend the politician, he just didn’t expect people who actually care about autistics to speak up.
I would not be inclined to accept this very insincere apology, especially since he doesn’t seem to understand what he did wrong.
Comment by Mike | November 6th, 2009
Lorene,
thank you for the background information. From this I assume that France is still in breach of the European Social Charter, despite a ruling against them made in 2004 after a complaint from Autism Europe.
The judgement contains the following conclusion.
53. The Committee recalls, as stated in its decision relative to Complaint No.1/1998 (International Commission of Jurist v. Portugal, § 32), that the implementation of the Charter requires the State Parties to take not merely legal action but also practical action to give full effect to the rights recognised in the Charter. When the achievement of one of the rights in question is exceptionally complex and particularly expensive to resolve, a State Party must take measures that allows it to achieve the objectives of the Charter within a reasonable time, with measurable progress and to an extent consistent with the maximum use of available resources. States Parties must be particularly mindful of the impact that their choices will have for groups with heightened vulnerabilities as well as for others persons affected including, especially, their families on whom falls the heaviest burden in the event of institutional shortcomings.
54. In the light of the afore-mentioned, the Committee notes that in the case of autistic children and adults, notwithstanding a national debate going back more than twenty years about the number of persons concerned and the relevant strategies required, and even after the enactment of the Disabled Persons Policy Act of 30 June 1975, France has failed to achieve sufficient progress in advancing the provision of education for persons with autism. It specifically notes that most of the French official documents, in particular those submitted during the procedure, still use a more restrictive definition of autism than that adopted by the World Heath Organisation and that there are still insufficient official statistics with which to rationally measure progress through time. The Committee considers that the fact that the establishments specialising in the education and care of disabled children (particularly those with autism) are not in general financed from the same budget as normal schools, does not in itself amount to discrimination, since it is primarily for States themselves to decide on the modalities of funding.
Nevertheless, it considers, as the authorities themselves acknowledge, and whether a broad or narrow definition of autism is adopted, that the proportion of children with autism being educated in either general or specialist schools is much lower than in the case of other children, whether or not disabled. It is also established, and not contested by the authorities, that there is a chronic shortage of care and support facilities for autistic adults.
CONCLUSION
For these reasons, the Committee concludes by 11 votes to 2 that the situation constitutes a violation of Articles 15§1 and 17§1 whether alone or read in combination with Article E of the revised European Social Charter.
Signed by:
Gerard QUINN
Rapporteur
Jean-Michel BELORGEY
President
Régis BRILLAT
Executive Secretary
Comment by Lorene Amet | November 6th, 2009
I must look into this again- At the time, I had been in touch with the lawyer involved in that 2004 court case and there was a lot of excitement from this outcome. I am not aware than anything concrete changed for families, but I am asking an update on this specific issue to other families in France right now. I should not have let this development slipped out of my mind.
In the document below, from Autism Europe, there is mention of 2 courts cases in which the French State was fined because it failed to provide education as stated in the European Social Charter.
http://www.autismeurope.org/portal/Portals/2/CASELAW-UK.pdf
My guess is that the wording used in the charter remains too loose, not sufficiently specific, to insure appropriate education is delivered. Like the sort of wording used for the Coordinated Support Plan here in Scotland, a big get away for authorities giving them a nice cover in their failure to deliver.
On the adult side of things (Laurentius Rex), there has been a few attempts to raise a national debate, particularly at the time of release of the Film: Her Name is Sabine, made by French Actress Sandrine Bonnaire. A great sense of frustration was expressed at the time.
http://www.youtube.com/watch?v=qyp97e_MWKI
But these sort of positive push always get swallowed with the more beautiful presentations of autism, such as Urville from Gilles Trehin
http://trehinp.dyndns.org/urville/mes%20dessins.htm
Or Daniel Tammet who presents well on French TV, speaking in French.
http://www.youtube.com/watch?v=hKZoDHTTvmg
And all sorts of mixed up confused psychoanalytical views of autism, e.g. Fernand Deligny, Cineast interested in autism. Have a read and you’ll understand what I mean:
“As in the film, Deligny’s peculiar method apprehended the imperceptible expressions beneath language because he believed in restoring the dignity of infra-human behaviors. In his eponymous book published in 1979, Les détours de l’agir ou le moindre geste, he clearly states that the intention to act or to behave is more important than the accomplishment of doing. Other books on the same subject are lyrically titled These Autistic Children Whose Project Escapes Us or The Efficient Vagabonds. This is a serious evolution in the conception of mentally challenged behaviors that are apparently eccentric, whimsical or unpredictable. Le Moindre Geste is an admirable testimony to experience the impossible autistic world from inside by piecing together the remnants of a lonely daily life”
http://mapage.noos.fr/screenville/crit/film/lemoindregeste.htm
Overall, a very useful set of information isn’t it?
Comment by Mike | November 6th, 2009
Regarding Gilles Trahin and Daniel Tammett, I do not blame them for it, but it is unfortunate the way that gifted and talented members of the autistic spectrum are taken up while the majority are shunned by society. It is in some ways comparable to the way that talented gay or black people in the UK can become “national treasures” (Lenny Henry, Stephen Fry, Alan Bennett) while racism and homophobia continue unabated.
With autism there have been attempts to divide high functioning from low functioning on the grounds that they have different needs and entitlements. High functioning are supposed to be able to advocate for themselves and not need support. Low functioning are unable to speak for themselves and rely on parents and professionals deciding for them. This is a false dichotomy but it is present both within the autism community and the wider general public.
Within the NAS I have found it significant that the welcome influx of able autistic adults into our leading ranks are amongst the most vocal in advocating for the rights and opinions of the least able to be recognized.Perhaps the new DSM V, if it does recognize autism as a dimensional rather than a categorical disorder will help in this process.
I believe we are only at the start of a long journey into acceptance and appropriate help and support for autistic people.
Comment by Lorene Amet | November 7th, 2009
A link shared by a friend on disability in France- Huffingtonpost yesterday.
http://www.huffingtonpost.com/2009/11/06/anne-lamic-parents-plan-w_n_348712.html.
I agree with much of what you say above Mike, of course, Gilles Trahin and Daniel Tammett and the likes are great- what is not so great it to use only very able, skilled brilliant personalities to represent autism. We all know there is a whole spectrum behind, often hidden (the is the topic of the post on HuffingtonP and it is not specific to ASD). I also agree that HFA/AS are not necessarily able to advocate for themselves, far from it in most instances, none the less their challenges are different. They don’t necessarily function well in society, but they function a lot more than another more severe ASD person, and they could function a lot better with a little more support, this is all achievable I think.
Some people argue that the representative of ND movements who claimed to be on the spectrum are not really. Certainly since I have received training to administer ADOS, I am certain than many would not received a diagnosis using the schedule 4, but they would score on Simon Boron Cohen Autism Quotient, that’s for sure! (I would score on that too). The training received with ADOS always argues that this assessment tool is not meant to “pathogenise”, meaning forcing the establishment of a diagnosis when a person does not have problems to functions along the triad of impairment. Sometimes, it is apparent the person has ASD traits, but if that person essentially functions well. In those instances, a diagnosis is not needed or useful.
In order to progress we have to represent the spectrum more fully, and a lot more accurately. I think the NAS fails badly on this if I may say, they ignore so much of the rest of the spectrum, see the range of articles of the last NAS magazine for example, it’s a AS world.
We (as culture) have also to examine our attitude towards disabilities.
I wrote something about last year:
http://www.autismtrust.org.uk/index.php?option=com_content&view=article&id=4&Itemid=4
But also, somehow, find a clean sheet, to start afresh without that many vested interest, egos etc. What a mess! I don’t know if this will ever be possible.
Comment by Lorene Amet | November 8th, 2009
Just a little update on specific concrete situations for some French families, here is what a family gets in term of support, shared with you as illustrative example. A mother, single, 4 children, 1ASD child age 14 integrated with support for 12hr a week in mainstream. Mother had to stop working for 7 years to support child, as there was no possible educational placement (despite being in a reasonably size University town, Grenoble). Mother has to pay 20hr a week for tutors at home. She gets 214 Euros a month from the government, the equivalent of £192. She is trying to fight for higher rate, because she is trying to get back to work part time, self employed (English-French translator).
I have looked at the criteria used to decide what a family should get; 3 things that are quite strikingly different to our DLA system. 1- It is assumed that the family has one parent only. i.e. they explain that the figures, means in practical terms that a single parents caring for a disabled child would get…2- they take into account what the family has to spend towards that disable child. This is not something our gov does, unless this is registered child care. This is something I have been challenging for some time, as registered child care provision in the UK is baby sitting. That’s not education. What my son needs is education, so I have to have trained tutors that are supervised, and this costs a lot of money/ This is being ignored by the DLA and family tax credit. 3- They will take into account if one of the parents needs to stop working and by how much to assist that child. Again, this is not really taken into account in the UK, unless the parent registered as a carer with 35hr or more of care a week. None the less over all, the amount of financial support is far greater here. This mother, my friend gets £191 a month and when I was in her situation, registered as a carer, I was able to get with DLA and family tax credit + child benefit, + reduction in house tax benefit about £1300 a month, a salary for most.
Regarding the changes that have taken place since the 2004 European court case referred to earlier, apparently there are more places called AVS, meaning auxiliaires de vie scolaire, or assistant for social life, a school assistant by the look of it. My friend requested one for her son in the spring this year, but the person, a former unemployed who has never met any disabled child and never received any training with regard to autism, is only just been appointed and is about to start just now.
At the same time there is a systematic criticism of any other alternative educational support, such as ABA and the like by the authorities and autism professionals. Instead, various pilot projects that have already been tested and researched elsewhere are initiated, for the good image. So a lot of concerns and struggles, but a slight improvement since 2004.
Comment by Mike | November 8th, 2009
Lorene,
thank you for the updates on the situation in France. It makes the UK look quite good in comparison even though our provision is far from ideal. I do not know what we can do to help matters over there apart from continuing to strive for better services in the UK and offer examples of best practice that our French colleagues can point to.
Comment by David N. Andrews M. Ed., C. P. S. E. | November 21st, 2009
“The Nordic countries, and Benelux seem to be further ahead in this respect, with movements in Sweden, Finland, Belgium and Holland (Though I am sure David Andrews might want to argue about impact in Finland)”
Situation here is pretty shitty, really. Heta and I and a couple of others were at the start of this whole Empowerment thing back in 1998 (after Heta went into Autismiliitto’s Helsinki office and asked them “I’m autistic - what can you do for me?”). We now have a lot of autistic people doing many wonderful things - and still the service providers ignore us. This is Stalinism at its best: Finland - the only remaining Soviet state…