Action: Letters to The Independent

In November 2007 The Independent published the letters below. The correspondence started with a letter from some members of an organisation called “Treating Autism” criticizing the NAS “Think Differently about Autism” campaign. Autreach group members discussed this on Autreach Online and the London Autistic Rights Movement email list and had replies published in The Independent. A member was interviewed for a subsequent article Autism: What are the ethics of treating disability?

Thursday, 8 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

Saturday, 10 November 2007

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

Chairman, Research Autism, Bristol

Wednesday, 14 November 2007

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

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

Saturday, 17 November 2007

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

Monday, 19 November 2007

Sir: As the mother of an autistic five-year-old, for me the trouble with autism (Letters, 16 November) is that the elastic definition is now so stretched that the word has become meaningless.

The National Autistic Society has a massive task to try to raise public awareness as the condition varies dramatically in each child or adult diagnosed. I think it would help if those with Asperger’s Syndrome (AS) were not included under the umbrella term.

I have found myself at NAS courses sitting next to parents of children who can communicate, can cope perfectly well at mainstream school but might have minor issues with tact or social behaviour. My daughter is at a special school with a one-to-one assistant, was in nappies until very recently and has yet to call me “Mummy” or meaningfully communicate at all. The parent of an AS child said to me with some sympathy: “Your daughter has full-blown autism.”

I have lost count of the people who have kindly inquired if my daughter has a “special talent” (most have seen the film Rainman). This is a common misperception; in more than 20 years of teaching, my daughter’s headmistress has never come across an autistic savant. It seems to me that if a child has any sort of learning/behavioural disability, a woolly diagnosis of being “on the autistic spectrum” is made. No wonder everyone is confused.

As for treatments, I think the NAS does well to steer clear. If you want to buy snake oil, thousands of “cures” can be found on the internet; I could have re-mortgaged my house many times in the hope of curing my daughter.

Angie Elliott

Welton le Marsh, Lincolnshire

Wednesday, 21 November 2007

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

Monday, 26 November 2007

Sir: In response to Doreen Carlson’s letter (14 November), as an autistic person I wish to state that I am most emphatically not a “suffering victim” of some imagined “disease”. To borrow the NAS campaign slogan, I may “think differently” from most people, but as such I am no more “ill” than if I were, say, homosexual or deaf.

I am in my early fifties and was diagnosed as autistic earlier this year. What has caused me suffering has not been autism, but a lifetime without acceptance and understanding of who I am. I have suffered from accusations of laziness, stupidity and insensitivity, the disappointment of my family when I failed to fulfil their ambitions for me; failed relationships (due to unrealistic expectations on both my own and other people’s parts); lost ambitions; countless hours of pointless psychotherapy (aimed, it now transpires, at curing me of being myself); and most recently some 10 years of unnecessarily ingesting antidepressants.

As an autistic person I can be chaotic, gullible, prone to forgetfulness, obsessive at times and easily overwhelmed by the demands of modern society. I am also creative, artistic, inventive and doggedly persistent. I chair the local residents’ association, I’ve taught at university and in community education and I have organised many exhibitions and workshops.

At present, I’m studying for a second MSc and I am the proud and loving mother of two beautiful, successful, academically and artistically gifted daughters.

Eliminating autism from the population, as Ms Carlson wants, would lead to a dramatic and dangerous loss of biodiversity within the human species.

Selina Postgate

Bristol

Friday, 30 November 2007

Sir: There is some truth in Angie Elliott’s suggestion (letter, 19 November) that the term “autistic spectrum” has become so elastic that it appears almost meaningless. But it is worth remembering why so many apparently disparate conditions have been thus yoked together.

Since the 1960s, it has been demonstrated that the many disorders grouped within the autistic spectrum have their origins in “faulty wiring”. Some people’s brains are not working as they should. (Let us not forget the relative horrors of the 1950s, when researchers saw autism as a form of mental illness caused primarily by maternal neglect, and came up with a convenient culprit: the “Refrigerator Mother”.)

Over the past 20 years, there has been a tenfold rise in autism, and it seems likely that many other cognitive disorders, which may or may not share a common aetiology with autism, are also on the increase. (It is common to hear teachers noting a marked decline in learning abilities of many children over the past decade.)

If we reject the idea of an autistic spectrum, we deny ourselves the ability to perceive that there might be a common thread and a possible common cause running through such diverse conditions as ADHD, Asperger’s and autism. We may hamper the ability of researchers to get to the bottom of why there are so many children with dissociative problems.

Nicholas Hewes

Skipton, North Yorkshire