INDEPENDENT NEWSPAPER - UK AUTISM WAR.

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A skirmish has broken out between the Pro Cure parents of Autistics, and the rest of us living in the real world.


IT ALL STARTED WITH THIS LETTER.

Letters: Autistic children
Hope for the autistic lies in research, not celebrity endorsements
Published: 08 November 2007
Sir: We, parents of autistic children, wish to repudiate the National Autistic Society and its claim to speak for us and our autistic children. In particular, we demand the withdrawal of the latest leaflet ("Think Differently about Autism") calling for public understanding of autism, complete with a website of supportive celebs.

Hope for people with autism does not lie in celebrity endorsement and a pretence that autism is normal but in the torrent of medical research pouring out of the United States. A model of autism as a genetic predisposition combined with precipitating environmental damages is being developed in the US, with new discoveries almost weekly. These developments offer real hope for those affected by autism.

What is the contribution of the NAS at this exciting time? The only contribution is a leaflet with pictures of people who "choose not to speak" and a plea for public understanding. The public should know that the NAS is riven with feuding between those who believe autism is "normal" and those who believe it is a disability which should be treated.

The NAS has a research arm called Research Autism. It has a website. None of this US research gets a mention. People with autism are sometimes said jokingly to be on another planet. It must be the one where the NAS is a well-informed, authoritative campaigning organisation and a powerful voice for change

Sally Eva; Mandi Rodwell;
Caroline Traa
(director, Treating Autism )And 22 others, London SE15
http://comment.independent.co.uk/letter ... 138334.ece


Autistic people are human beings
Sir: Sally Eva and others make a plea for the National Autistic Society to stop pretending that autism is normal, and get behind methods to treat it (letter, 8 November). How telling it is that this plea comes not from "people with autism", but from their parents.

I am not a person with autism. I am an autistic person. Autism is not some inconvenient extra that can be removed with the right magic pill, but a part of who I am. I would not have it any other way. The real disability comes, not from autism, but from people who, however well-meaning they are, deny that my viewpoint is valid.

This, sadly, seems to be where Ms Eva and her colleagues seem to be coming from, and my fellow autists and I are poorly served by those who wish to remould us to fit their preconceived model of what it is to be "normal". Hope for the autistic lies not in yet more pills but in recognising that we too are human beings.
Phil Culmer
Southend on Sea, Essex


Sir: I write in response to the letter from Sally Eva and others. The National Autistic Society is keenly aware of the demands and sometimes desperate decisions some families living with autism face and how immensely important it is that appropriate services are available.
We produce a range of materials that are designed to educate and inform. As autism is a spectrum condition it affects each person in a different way. We do our utmost to reflect the range of needs across our communications. The leaflet mentioned by the writers of the letter is just one part of our awareness campaign, which aims to reflect the full range of experiences.

We strongly support calls for more research into autism so that we may better understand what causes autism and which interventions can make a real difference. However, it is also imperative that people with autism have strong support now. Without such support, autism can have a profound – sometimes devastating – effect on individuals and families. Current provision for those with the disability is deeply inadequate, given the scale of the need.

There are many hundreds of children and adults with autism who cannot speak for themselves and whose families cannot speak on their behalf because they are overwhelmed by the difficulties they face. Our "Think Differently about Autism" awareness campaign aims to improve public understanding of autism in the hope that changing perception of this complex and lifelong disability will help enhance the lives of people living with autism.

We are pleased that thousands of people agree with us and have already signed our petition calling on the UK Government to ratify the UN Convention on the Rights of Persons with Disabilities, and take specific action to increase awareness of autism, tackle discrimination and improve training.
Benet Middleton

Director of Communication and Public Affairs, The National Autistic Society, London EC1


Sir: I am very encouraged to see The Independent publishing letters from the autism community and commend you for being balanced in reporting this issue. I would like to comment on the letter from parents criticising the NAS in its representation of autism today. I agree that it is totally misplaced of the NAS to focus the public perception of autism on "lifelong disability" and "incurable" and demand "public understanding" on that basis.

This is so totally inaccurate a picture today – indeed my own son has recovered his intellectual functioning, not to mention health recovery, through biomedical interventions which address the environmental insults he was subjected to as an infant that precipitated his descent into autism – the model that is the subject of current research and thinking.

I hope the NAS start to listen to the rest of the world, to medical science, and to parents in the UK who want hope for their children and for their future.
Celia Forrest
London NW3


Sir: I would like to clarify that Research Autism is not, in fact, the research arm of The National Autistic Society but an independent organisation which funds research into interventions and treatments for people living with autism. Our remit is not research into the causes of the condition, which accounts for why this type of research is not included on our website.
We do, however, share the National Autistic Society's aim to enhance public understanding of the condition.
Geoffrey Maddrell

SO I WROTE IN.

Chairman, Research Autism, Bristol
Can autistic people ever be 'cured'?
Sir: Sally Eva and others (letter, 8 November) demand that "the National Autistic Society rescind its latest leaflet ('Think Differently about Autism') calling for public understanding of autism, complete with a website of supportive celebs".

As an employee of the NAS, working both at head office and teaching meditation to Autistics in Acton, I feel I hardly need comment on the sheer lunacy of their demand to end a campaign to promote and improve the lives of the very kinds of people they have as children. Of course, the writers of the letter are not on the autistic spectrum. I am.

We in the global and British autistic communities, both online and in person, have seen a sharp rise in this sort of behaviour in "neurotypical" parents. They don't actually have the condition, but are often desperate to believe their children will one day be like them. Like the drowning, they clutch at anything.

Reports of research in America seem to say that nature can be changed. The brain can be altered. Genetics and chromosomes can be "cured" to be the way they want them to be. Let us have respect for the love and care that motivates such people. However, as so many of us on and off the spectrum believe, time will tell.
Paul Wady
Ilford, Essex

SAME ISSUE, THIS WAS PUBLISHED WITH IT.

Sir: No one suggests diseases such as diabetes and cancer are to be welcomed and embraced. Initiatives to eliminate the disease are not campaigns against the suffering victims.
Autism is a disorder, it is not a person. My son is happier when he is free of his autistic symptoms and participating with other children in school, sports and play. Every time autism causes a child to be unable to participate in typical endeavours of childhood, it is a shame. Eliminating this disorder from our population would be a very good thing.

Those seeking to blur the line between fighting the disorder and accepting children victimised by it are doing harm to everyone. Dominion over autistic disorder and elimination of this destructive influence is not inconsistent with loving persons diagnosed on the autism spectrum.
Doreen Carlson
Greenfield, Massachusetts, USA


Sir: As someone who is mildly autistic, I have followed the recent letters on the subject of the NAS with interest. I have not been "cured" of autism and have no desire to be "cured". However, the NAS has provided me, and many like me, with the support and services to lead a happy and fulfilling life and enable us to cope with the condition. Demanding the withdrawal of public understanding or implying that we are of low intelligence and poor health does not help our cause.
Haywood Drake
Guildford, Surrey

THESE THREE LETTER APPEARED THE NEXT SATURDAY, 17TH NOVEMBER.

Society's prejudice against autism

Sir: Doreen Carlson, parent of an autistic child (Letters, 14
November), sees autism as 100-per-cent negative, which is hardly
surprising given the diagnostic criteria themselves and the way
autism is usually portrayed.

The autistic disposition, while distinctive, would be much less
disabling in a society which did not require high levels of
versatility and deviousness in social exchange. Nobody in this debate
wants to see children bullied in the playground. But maybe the answer
is to foster mutual understanding – as advocated in the National
Autistic Society (NAS) "think differently" campaign – rather than
authorising the bullies' values and "eliminating" the bullied.

James Watson is quoted by the international charity "Autism Speaks"
as saying that "autism is the worst thing that can happen to a
family". We strongly disagree and think this prejudice needs
fighting – cancer for example would be much worse! The media outcry
provoked by Watson's blatant prejudice against black people and
worryingly unscientific and unethical ideas about genetics is
strangely absent in response to his views on autism. Could it be that
Watson's prejudice on this issue is either invisible or simply not
worth commenting on because it is a view shared by almost everyone?

Dinah Murray
Autistic Rights Movement, London n19


Sir: I feel that Paul Wady and others who objected to the letter of
Doreen Carlson et al are missing the point that was being made.
Granted, the role of the NAS is a difficult one because it has to
represent all the people on the very wide autistic spectrum, a
spectrum which more than likely consists of multiple conditions.

However, we feel that the NAS is choosing to listen only to those who
have a voice. There is an element within the autism community that
supports neuro-diversity and does not wish to be cured. While I
respect their wishes, I take issue with the fact that the NAS chooses
to impose the wishes of this verbal minority on the majority.

When my little boy was diagnosed with autistic spectrum disorder he
had permanent, explosive and watery diarrhoea. His abdomen was very
distended, hard and hot to the touch. He cried out in pain at night
yet was totally non-verbal and unable to communicate what his
ailments were. He self-harmed and couldn't play or have a proper
relationship with his family.

Despite numerous requests, the NHS has never referred him to a gastro-
enterologist and has never treated these conditions, writing them off
as symptoms of autism. The NAS, instead of speaking out for my son
and pushing the NHS to treat him, publish leaflets that give the
impression that my son chooses to be non-verbal, non-communicative
and presumably, therefore, chooses to be in pain.

Paul Wady calls us lunatics for opposing a campaign that promotes the
improvement of the lives of people with autism. I say this campaign
promotes the status quo which chooses to listen to the vocal few and
ignores the screams for help from the non-verbal majority.

Sara Moroza-James
Plymouth


Sir: In response to Doreen Carlson and other recent letters
suggesting that autism should be cured or prevented: have the wider
implications been considered? Without the great contributions of many
people who are widely thought to have been autistic such as Newton,
Einstein and Van Gogh, many facets of society would be much less
advanced. Not only does autism cause the desire for a cure from some
quarters, but also much of the innovation that could make cures and
preventions possible.

Richard Chandler

Abbots Langley, Hertfordshire

http://comment.independent.co.uk/letter ... 169617.ece


(FOUND THIS ARTICLE TOO.)
In search of a cure for autism
Parents spend thousands on therapies that claim to help autistic children live normal lives, but most of them are unproven. Now doctors aim to find out what really works
By Jane Feinmann
Published: 02 August 2004

When Tim was diagnosed with autism five years ago, his parents were told he would be unlikely to speak or make relationships. Now aged seven and doing well in mainstream primary school, he and his family are moving to a new town and a fresh start. His mother, Andrea, believes that only other people's memories of his autistic past will hamper his future as a normally developing child.

When Tim was diagnosed with autism five years ago, his parents were told he would be unlikely to speak or make relationships. Now aged seven and doing well in mainstream primary school, he and his family are moving to a new town and a fresh start. His mother, Andrea, believes that only other people's memories of his autistic past will hamper his future as a normally developing child.

His advances have occurred as a result of working with an intensive educational intervention programme - paid for by his local educational authority but unproven as a clinical intervention. And in the field of autism therapy, it is not unique in this respect.

Of the hundreds of remedies and interventions on offer to the half-million people with autism, of whom 100,000 are children, virtually none has been subjected to the stringent scientific evaluation required throughout the rest of health care.

"Evidence-based practice has passed autism by," says Richard Mills, the research director at the National Autistic Society (NAS). "Only eight per cent of the research budget spent on the disorder is spent on interventions. As a result, there is no reliable guidance available to desperate parents. Doctors are just as much in the dark as parents and often less wise because they think they know all the answers."

Inevitably, parents turn to the internet for help and the pressure to make the right choices can be overwhelming. There are a dozen or more intensive educational programmes for young children, of the type that have helped Tim. There are flash cards and behavioural therapies, diets that restrict what the child eats or add expensive supplements, not to mention opportunities to swim with dolphins. Drugs are equally under-investigated. Seven out of 10 children with autism are taking prescription drugs, including ritalin, SSRIs, major tranquillisers and anti-psychotics, none of which has been tested for people with autism or adequately studied in children.

"Most parents start by believing that the disorder can be cured and throw themselves into researching therapies," says Andrea Spinks, the mother of eight-year-old, severely autistic Emily. "The paediatrician who diagnosed Emily gave us no advice whatsoever. So every time you hear of something new, you get terrified that you're missing the one therapy that will make all the difference."

Such pressures can prove expensive. Patrick Armstrong's parents have spent £45,000 in the two years since he was diagnosed with autism at the age of two - a substantial amount of which was not money well spent. Beverley Armstrong paid £3,000 to a "verbal behaviour consultant", who taught Patrick sign language and then left without giving notice. Another £1,000 went on a workshop that would have "taught Patrick as though he was a robot". And £250 went on an hour's telephone consultation with a nutritionist "who basically told me to make sure he ate his vegetables".

At last, however, change is on the way. The Autism Intervention Research Trust was set up last month to fund research both to "halt the exploitation and the wasted time and money on inappropriate methods of treatment" and to find out what works.

"Good advice, based on impartial scientific evaluation, is very hard for parents and many professionals to find," the Trust's chairman, Geoffrey Maddell, said at its launch. "Yet without effective and timely intervention, the consequences for the individual and the family can be devastating" - implying what many parents believe that, never mind the cause of autism, far more can be done to improve the life skills of children who have to live with the disorder.
The Trust, which has the support of leading international academics and will draw funding from the Government and the research bodies, has already begun work by drawing up a list of priorities, based on a survey carried out among the NAS membership. The initial task will be to provide doctors, and eventually parents, with a website that gives detailed information about the latest advances and methods of intervention, including claims that are being made about each therapy and how those claims stand up to scientific evaluation.

Parents are most keen to get an assessment of biomedical interventions, particularly diets and vitamin supplements - which are likely to be among the first candidates for evaluation. More tricky will be an assessment of the early intervention programmes, which appear to promise the greatest benefit and, at up to £40,000 a year per child, are by far the most expensive - not least, says Mills, because the wide autistic spectrum means that what works for one child will not necessarily help another.

What research there is, and almost none is independent, suggests that at least some children with autism can make massive strides forward. In 1987, the University of California Los Angeles psychologist, Ivar Lovaas, published the results of a (subsequently hugely successful) intensive early intervention programme, teaching cognitive skills to children under four years of age - reporting that 47 per cent of the children were successfully mainstreamed.

Since then, other early intervention programmes such as the Son-Rise programme, TEACCH and Growing Minds (which helped Tim) have become widely used on both sides of Atlantic. Beverley Armstrong has also found Growing Minds transformational - though she acknowledges that it takes up considerable time and money. "It's all about joining with the child to encourage him to relate to other people. You follow their lead, so that when he flaps his arms, you flap your arms."
Patrick is taught at home with a rota of up to four tutors at a time, with Beverley planning the programme, video taping lesson and regularly visiting the headquarters in the USA, "something I find essential to keep motivated". But it's worthwhile, she says - Patrick attends a mainstream playgroup, uses single words and has near-normal eye contact with people he meets. "He is still delayed developmentally but his progress has been astounding. He is as bright as a button and ready for mainstream primary school next year," she says. She is also trying to raise £7,000 to pay for a week's intensive training for Patrick in the US.

Another successful programme, PECS (Picture Exchange Communication System), which encourages children with autism to exploit their often highly developed visual senses, has helped Emily Spinks. Three months ago, she started producing animated stories that are already provoking interest in the art world. "Suddenly, there's this feeling: Em's got something. After all the work for such little reward, suddenly a door has opened," says her mother.

Yet there is also deep concern about the "umpteen complaints" that the NAS receives from parents who have invested heavily in their children's future and been disappointed. There's also recognition that the programmes are both very expensive and under-assessed, not least as regards their long-term impact.

"Take, for instance, the fact that at two weeks, a normally developing baby is aware of its mother's emotions. Yet that is something that will always remain a problem for someone with autism," says Ofer Golan, a research coordinator at Cambridge University's Autism Research Centre who uses the centre's Mind Reading programme (Jessica Kingsley Publishers) to help eight- to 14-year-old Asperger's children to develop an emotional language. "At a basic level, where children are learning about different emotions by rote, reinforced by rewards, the programme works quite well. But even with a group of high-achieving autistic children, the difficulty comes when they're encouraged to generalise what they've learnt to other situations. One of them asked me: "Well, now I can tell when someone is angry with me. So what do I do now?"

There is concern, says Richard Mills, that while children lose the symptoms of autism, and behave in ways that are more acceptable, enabling them to progress at school more easily, they remain autistic. "When they get to secondary school or university, where social skills are needed for survival, there can be problems."

Meanwhile, at Reading University, microbiologists have just got the go-ahead for new research, focusing - for the first time since the MMR débâcle - on the high incidence of gastro-intestinal problems in children with autism, with the possibility that probiotics, live microbiological food supplements that have been shown to prevent toxic bacteria from colonising the gut, may have a role in therapy.

In a previous study, professor Glenn Gibson at Reading's department of microbiology, has already shown that that, compared to normally developing children, those with autism are more likely to have a poisonous type of bacteria, clostridia, in their gut, as well as having a higher risk of suffering chronic constipation or diarrhoea. "It is a particularly nasty bug that can cause a dangerous gut disease in newborns," explains professor Gibson. "It also produces neurotoxins, which can affect the brain - which may explain the link with autism."

In the new study, a group of autistic children with high levels of the clostridia, will be given a probiotic drink that contains Lactobacillus plantarum, "good" bacteria that the team has already shown are able to keep the clostridia under control. At the same time, psychologists will monitor the children's use of language and social skills and compare them with another group of autistic children who will receive a placebo.

What's certain to emerge from this and the other new research programmes, is that there is no cure for autism. The new research programmes, however, represent a welcome change in clinical attitude to autism - that the existence of a wide autistic spectrum and the lack of understanding of its cause, doesn't mean parents should be left alone to decide how to provide support. As Geoffrey Maddell says: "Research into autism needs to be based on a wholehearted belief in the value of those on the spectrum and the hidden benefits they can bring to those around them. It must help them realise their potential."

The National Autistic Society helpline: 0845 0704004; Autism Intervention Research Trust: 0117 974 8400


CHEN GERSHIN WAS PUBLISHED IN THE PAPER TODAY, TOGETHER WITH

Two places on the autistic spectrum

Sir: I am autistic, and have followed the latest autism "battle" in your letter columns with great interest. Since the National Autism Society has a long history of leading the global effort for raising awareness about autism and about autistics' human rights, its latest campaign has the potential to improve quality of life for millions of autistics, reaching far beyond the shores of the UK.

Nobody questions people's right to do their best to raise their children into becoming independent people, but they will always remain autistic and they will always need recognition and acceptance as such.

While "classical" autism has been widely known for over 60 years now, the more "high-functioning" regions of the autistic spectrum are still mostly unheard of. Your NAS has been doing a great job of raising awareness about the autistic spectrum in its entirety and its latest campaign looks like another move in the right direction.

We, autistic adults, need human society to cherish us for what we are, rather than make futile efforts to change us into something we could never be. It was the great Hans Asperger who wrote: "It seems that for success in science and art, a dash of autism is essential." And indeed, if it wasn't for autistic qualities, we would have never enjoyed the achievements of great scientists such as Albert Einstein, Alan Turing or Paul Erdos, who all exhibited pronounced autistic characteristics

Eliminating autism from the face of the earth would eliminate qualities that are required in order to maintain and advance human civilisation.

Chen Gershuni

Tel Aviv, Israel


Sir: The range of letters on the subject of the National Autism Society's recent campaign underlines the enormous problem that the wide-ranging autism community faces. I can completely understand an autistic person, happy in themselves and articulate, wondering why on earth someone would seek to "cure" them of their personality.

If I had any signal whatsoever that my own son, who regressed from a speaking, friendly, happy child at two-and-a-half to a non-verbal, head-banging child at three-and-a-half, would grow up into someone able to respond in such an articulate fashion I would be delirious with happiness and pride. Indeed at present I'd be delirious if he could respond to a question about what he wants for breakfast or successfully use the toilet. He is now nine, he has just (after almost three years insisting to the NHS that his self-harming behaviours may be pain-related) been diagnosed with chronic enterocolitis, a condition that responds to medical treatment and dietary and biomedical treatment.

I can't get back the years he's been in pain with a perfectly treatable gut condition. I can and do wish that the NAS would work with government and the NHS to keep abreast of contemporary research that is happening in the US and with families to offer meaningful guidance. Perhaps this exchange of letters may pave the way for that to happen.

For my own son, we hope that he may now be able to reach whatever his potential is free of pain, discomfort and the myriad biological and allergy issues that should have been researched and treated many years ago in order to avoid a great deal of unnecessary suffering.

Stephanie Sirr

Nottingham


THIS WILL PROBIBLY GO ON FOR SOME TIME...


PAUL WADY - HoxtonPaul.

i don't think anyone's trying to say that autism is "normal" but for high functioning autistics, autism is not always completely negative.

I don't see why wanting autism to be more accepted and wanting to cure it, (or, more sensibly, provide some kind of treatment) have to be opposing viewpoints?? If it is possible to cure or prevent autism then acceptance will be necessary until that cure becomes available. If a therapy is provided to an autistic person it will ease their problems but the problems will still be there - so that person would still want acceptance. And, yes, the desirability of finding a cure clearly depends on how far down the spectrum you are.


Or in other words - here's a fence, let me sit on it.

That is sort of the way I feel about it, too - I resent the idea that, somehow, if I go to therapy enough it is going to make me want to be around other people, but some people really benefit from therapy so they should have that option . . .
For severely effected autistic people I do think that some forms of behavioral therapy can teach skills that really are needed in the real world - such as using the bathroom in the right place or showering daily or dressing oneself - I've only had the experience of really talking to two severely autistic people, but they both were very embarassed by the inability to understand/perform these sorts of behaviors and were glad to find a way to learn them - but I totally disagree with the 'beat it out of them' behavioral therapy that teaches autistic people to behave in a socially acceptable way, regardless of how uncomfortable it is for them.
I can use behavioral techniques to teach my cat to walk on his hind legs, but he is still a cat and he isn't going to like to walk on his hind legs.

Hmmmm...
What's her name out of Everybody Loves Raymond?
Patricia Heaton?

[youtube]http://www.youtube.com/watch?v=ZXIPZpVvU7c[/youtube]

Normal is relative. What is normal for someone might not be for another. Defining Autism as not being normal, just plays into the hands of the curbies. To us NTs behave very abnormally, yet nobody seeks to cure them.

Normal is what you are used to. Nothing more.

I have only one question: what is the "hope for those affected with autism" that those parents spoke of? Getting them aborted as foetuses so that their parents could have healthy, normal, issue-less children instead and be happy?

"Normal" is the middle of the bell curve. "NT" is "Nuerologically Typical," i.e. "common." This is "normal" with respect to a population.

"Normal" is also what you do everyday. Eating, sleeping, talking, stimming, exercising (or not). This is "normal" with respect to an individual.

There are no "issue-less" children, just children with different issues.

Of course, not just children but adults as well. As Carl Jung put it once, "If you believe you have no complexes, it is the complexes that have you". Except those who are possessed by their complexes, by definition, see things a little differently.