Aspies For Freedom

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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

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

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

Is there anything like the NAS in the US? It sounds like a great group to be a part of...