And I Did Not Speak Out

The hell of elephants is they don’t just exist in Africa and Asia. They exist all over and when it comes to autism, the biggest ones may just be in France. I am referring to elephants in a metaphorical sense, of course. Big grey obstacles thrown up by birks more interested in other things. Autismum posts of one here.

To summarise, the local council is intent on cutting respite care for parents of special needs children. Respite she points out is not just about dumping the kids on someone else for a few hours or overnight, but about adequate care of children during the time out for the primary caregivers. The caregiver cannot be an arbitrary person each time, but one who is constant and able to get to know the autist, so they are not strangers each time. The interesting thing is that while the council diligently cuts costs, they are voting to give themselves iPads and printers in order to further the paperless world and be more efficient. Printers for a paperless world! Go figure.

Autismum points out that not only under these changes will the respite carers stand to lose jobs, but parents too who rely on respite care stand to lose their jobs as well.

As I said elephants exist everywhere and it is worthwhile realising that we need solidarity across the globe to further futures for autistic people and recall that if in one place the services to and rights of spectrum kids are eroded, others will believe they can do the same. Famously, Martin Niemoller said:

First they came for the Communists,
And I did not speak out
Because I was not a Communist
Then they came for the Socialists,
And I did not speak out
Because I was not a Socialist
…
Then they came for me
And there was no one left
To speak out for me.

This really is a social compact that goes to mutual protection. I would like you to consider this:

First they diminished the rights of the French autists,
And I did not speak out
Because we were not we were not French,
Then they eroded service to the Welsh autists
And I did not speak out
Because we were not Welsh
…
And then they turned to the rights of my child
And…

The Creators of What We Fear

Too much has been written in the wake of the Newtown tragedy and I am one of those who wrote about it. I have reflected more quietly since then and decided not to contribute further to the Adam Lanza and the perceived Asperger’s link. Then I remembered a story from my teen years, back in the 1970′s, which through my thoughts into stark relief and I turned to the keyboard to write once more of this.

I think I was 15 at the time, perhaps 14. I was pretty much a vile kid in many ways and in the day on question I was in a poor mood. I got on to a bus, and there was a woman on it whose face was badly scarred. Not giving a toss about anyone, I sneered at her, lip lifted in a Billy Idol or Elvis Presley disdain. She saw my face and looked down, picked up a pie and with her teeth tore the wrapper. There was something in the way she did it, something so wild that I hated myself in that instant for I knew that look was unforgivable. I said nothing and sat down. But 37 years later, I cannot remember her face, but I still remember the way her teeth bit into the packet and ripped it apart.

How is this relevant to Newtown and Adam Lanza? I have no idea what happened to scarred woman. I never saw her again and have no idea what the effect of the sneer was. Did it strengthen her resolve to face society, give gits like me the finger, or did she go home and kill herself? I have no idea, it may well have been neither, but what I do know is that what I did was wrong. And it comes down to this – people be they autists, bulimics or “normal” are the product of the way they are treated. Not just by family, but by others too, taechers or people in the street or even on a bus. Recently in South Africa, a kid, a good kid to all intents and purposes, killed the school bully when it became too much for him. I think of carers who have killed when the burden became too much. And again and again and again, the question comes to mind where were we.

I believe so firmly that a smile to that tragically scarred woman was the right thing. It would have humanised her, instead of my action which dehumanised her. I am still sorry for this, still feel the guilt. But when we were needed or could have made a difference in the life of a single person, did we smile or snarl? Of course, there are things we cannot change such as chemical imbalances which can lead to tragedy. But society and its members are essentially a product of our attitude to others and if we constantly criticise, hate, disrespect, disdain, isolate and alienate, we contribute to the creation of that we fear.

Autists are not mass-murderers

In the wake of the shootings at a elementary school in Newton, Connecticut, reports have become to emerge that the shooter was on the autistic spectrum. The same happened in the wake of the Batman shootings earlier this year. I can just imagine the editors of the TV stations and newspapers, “A mass murder? Was the killer autistic? Who cares? Assume it, anyway!” Why do visions of J. Jonah Jameson and his attitude to Spiderman spring so quickly to mind?

The media has a scapegoat that is called autism. It is a buzzword and in their use of it, the effect is to demonise those on the spectrum as freaks and mass-murders in waiting. Just this year we have had the allegations by Joe Scarborough, the hideous article in Time about the changes to the DSM titled, “Redefining Crazy.” You see autism creates copy. That false images of people on the spectrum are conveyed is irrelevant. The literature showing that autistic people and special needs people are far more likely to be victims of violence than perpetrators is ignored before the gods “Column Inches” and “News Insert.”

This type of reporting constitutes human rights violations. That the next door neighbour thinks someone may have been autistic, does not make them autistic. In keeping with comic books I also recall the mutant riots of the X-Men. Intolerant people whipped to a frenzy by misinformation resulting in fear, demanding the incarceration of mutant kind for the safety of humanity. If the press carries on in this way, a society generally apathetic to the plight of those on the spectrum, will be whipped to fear and demand a “final solution” for autistic kind. The thing is (and this is the part that will shock the journalism community to it’s core) autists are not mutants with superpowers, they are people, human people. You simply victimise them further by automatic assumptions that any mass-murderer is autistic.

The press needs a policy on the effects of its reporting on the public perception and understanding of autism. Stop demonising them.

The New Bigotry

I have heard a report recently that parents from an inclusive school had gathered signatures to petition for the exclusion of an Asperger’s child from the school. FOR SHAME!!!!

Are specials needs children now the new lower order of South African society? Would you petition for a child to be excluded for being a different race group? Of course not! You hypocrites. You pay lip service to equality, but when it comes to equality for special needs children, you somehow lose those high sounding values and are prepared to cast aside the different ones.

This is the same mindset as the one which animated apartheid. FOR SHAME!!!! Less than 20 years after the first democratic election in this country, your values have sunk so fucking low, that you replace racist apartheid with special needs discrimination and no doubt pride yourself on how liberal you are. So sit there with your self-satisfied hypocrisy and consider how discriminatory, how biased , how
contemptible and bigoted you are. And do not try and reintroduce apartheid in a different form.

I hope your kids are better than you. FOR SHAME!!! Have you no decency and compassion? NONE!!!!

The Threat to Special Education

The South African Minister of Basic Education, Angie Motshekga holds the position that education is not a constitututional right despite the constitution stating that it is. The Constitutional Court has averred that it is a right which is immediately realisable and yet the Minister refuses to issue standards to benchmark this right and indeed as I have said holds that it is not a right.

If then the Minister will not go to bat for basic education for neurotypicals, how much less will she go to bat for the educational rights of special needs kids such as the autistic, the blind, the cerebral palsied – the list goes on.

In a country where the government will not even deliver basic education for the “abled” community and the Minister is arrogant enough to claim that the failures are not her fault and that somehow the buck stops a couple of tiers lower than her in the hierarchy, how much less likely are educational services to be provided for special needs chlidren. As far as I know there are only seven publicly funded autism schools in the country and a number of schools with autism units. There is the mandate towards the development of inclusive education, detailed in White Paper No. 6 more than 10 years ago, but this has largely stalled.

Worthy of note is the increased number of autism units being developed in KwaZulu-Natal as a result of some wonderful advocacy from Autism in Action. It is hoped that these will be of good quality and not just parking places.

This however is not just about autism, but the entire SEN community. The government will not deliver for normal kids, the minister arguing that education is not a right. How much less of a right will they consider it to be for special needs pupils?

References

http://mg.co.za/article/2012-08-03-pupils-can-wait-says-motshekga/

Evidence-based medicine: Best Practice

At the heart of accepted medical and therapeutic practice is the notion of evidence-based medicine. The idea is simple – a drug, a therapy should be tested before going into general use. Let me correct that – it should be properly tested and proven in light of the testing to be beneficial.

At some other point, I want to post on how a protocol is developed and the ethical guidelines for the research it involves. The point of this post though is to state what evidence-based medicine is and it’s value.

A trial properly done ends in what in terms used by the Cochrane Collection as “likely to be beneficial”, “likely to be harmful” or “evidence did not support either benefit or harm.” The latter would suggest that further trialling is necessary. Are the conclusions perfect? No, they are not always – you only have to recall the tragedy of thalidomide to know that. They are however, medicine’s best effort to ensure safety. And the result of the thalidomide tragedy was to plug loopholes in the way things are trialled thus attempting to prevent such a reoccurrence.

The question to ask your doctor when they suggest the Great Oxidised Pineapple Treatment known to cure all forms of autism, is how was it tested and against what other interventions. Ask to see the protocol. My son has asthma and our doctor offered to show me the treatment protocol for it and any doctor should be at least be prepared to point you to it. You should also be able to be guided to the literature on the trialling process. The important thing is that these must be available in order to show that there is evidence to substantiate use of the drug, the process or the therapy.

As a final caveat, literature should be peer-reviewed in a recognised journal such as the Lancet or the Journal of the American Medical Association. An article in a hack journal such as the Great Journal of Pineapple Therapies, peer-reviewed only by the quacks who endorse it, has no evidence value.

Surely, surely, surely your autist has a right to interventions that evidence shows are likely to work.

Towards an Autistic Rights Charter

Several countries have one, many don’t – France I am certain does not. I don’t think South Africa does and we need one as does any country. What is this it? A Charter or Rights for the Autistic Person.

Based on my experience as the parent of an autist and reading of the stories of others, both people on the spectrum and those involved with them as carers and therapists, autists desperately need a statement which enshrines their right to dignity, to freedom, to quality treatment.

A full discussion of a charter will take too long here, so I will discuss it intermittently in various posts.

The 1st item is a right to early detection. It is well recognised that early intervention leads to better outcomes. On this one thing, the scientific literature is unanimous. Despite this doctors, including paediatricians, routinely ignore establsished benchmarks which failure to meet, indicates the possible existence of a physical or
neuro-developmental condition. Physicians need to recognise that ignoring benchmarks runs contrary to the Hippocratic principle of do no harm. Physicians need to acknowledge that in failing to provide for early diagnosis and intervention, militates against an optimal life for the autistic person.

Both literature and anecdotes provide evidence that too often, there is an early assumption of retardation, which proves to be incorrect as the autist develops. Assumptions of retardation, may lead to less therapeutic effort and the autist needs to treated on the assumption that they have potential, irrespective of the current assumed condition.

Autism in France

To: The President Elect of France, Monsieur Francois Hollande,

Congratulations on your election victory and I wish you and France well as you prepare to assume the presidency of your country.

You will face many challenges both social and economic, but there is one situation in France of which you may not be aware – the position of autistic children and the outdated and sometimes barbaric practices which they sometimes endure. The condition is described by Daniel Fasquelle, a member of the French Parliament as “France’s Shame”[1]. The practices and beliefs of the majority of the psychiatric community are severely backwards and not acquainted with current international research and practice.

The issue is a human rights one. Autism in France is treated by psychotherapy when it is widely know to be neurological rather than psychological. The French judiciary have even expanded the nature of the problem into a freedom of speech issue by banning a film dealing with this topic. [2]

France holds that autistic children cannot accomplish much at all and generally institutionalises them. In other countries, many children with autism go on to lead productive lives. Some marry and achieve degrees. France denies them this opportunity. Your country sees causes in psychological terms including  the widely discredited and now rejected notion of the refrigerator mother.

Monsieur Hollande, you have a chance to help the children of France who are autistic. You have a chance to ensure that they are treated according to modern methods, with understood notions of the cause. You have a chance to become a champion for the human rights of those children in your country who have no voice. I beseech you to become the hero these children need. I am not alone in this request. Thousands more are -http://www.thepetitionsite.com/2/autism-stop-abuse-autistics-france/.

---

References

1. Schofield, H. France’s autism treatment ‘shame’ - http://www.bbc.co.uk/news/magazine-17583123 – Viewed 7 May 2012.
2. France Still in the Dark Ages of Autism Treatment – http://www.icare4autism.org/news/2012/01/france-still-in-the-dark-ages-of-autism-treatment/ – Viewed 9 May 2012

Autism – A Human Rights Issue

I would like to paraphrase President Mandela – “Autism is no longer just a disorder, it is a human rights issue.” It is interesting that except for one sentence, “The aged, the orphans, the disabled and the sick shall be cared for by the state,”the Freedom Charter does not specifically mention the rights of special needs groups, be it deaf, blind, wheelchair bound or cognitively handicapped. The implication of rights can be subsumed into broader rights such as “The Doors of Learning and Culture Shall be Opened.”

Yet, 1000′s sit without education, without therapy, without a future, while they are ignored for worthier political causes, causes which are more popular, causes which ensure the vote in the next election. The actions of the government are more to do with staying in power than exercising power. So to the Ministries of Women, Children, and People with Disabilities, Education, Health, Social Welfare and Finance, start to exercise power on behalf of the 1 percent who have autism, on behalf of the carers affected by it. Start to demonstrate, compassion and not cadreism.

Autistic Spectrum Disorders are not going away. The Freedom Charter says “All Shall Enjoy Equal Human Rights.” I assure the government autists are human, but their rights are far from equal. Beyond the Freedom Charter, South Africa is a signatory to UN conventions on the rights of disabled people. Deliver those rights to the 1 percent on the spectrum.

The 1 percent need their rights delivered and honoured. They need their dignity. They need respect. They need their humanity affirmed. To me it is beyond doubt – Autism is no longer just a disorder, it is a human rights issue.