Bob Wright
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How does a child vanish in plain sight? Our grandson, Christian, used to watch trucks drive by and name them all - “fire truck”, “mail truck” - until, suddenly, he had no more words. We used to go for walks on the beach until he could no longer tolerate the feeling of sand on his feet. Warm smiles were gone, too, replaced by eyes that would not connect with mine.
The boy who had brought so much joy and had been hitting all his developmental milestones was slipping away. At first, doctors told us it was because he had a new baby brother, or because boys are slower to develop. Our concern turned into panic as Christian became increasingly sick and disconnected.
Eventually, we learnt the real answer when Christian had autism diagnosed. We were stunned. Despite having spent decades in the media business, we knew little about the disorder, and although we had access to the best medical care, we were at a loss about what to do next. Christian's doctors told us “goodbye and good luck”. As we struggled to understand autism and help our grandson, our personal quest became a public crusade.
This crusade is very necessary: 1 per cent of the population in Britain - more than 500,000 people - suffer from autism spectrum disorder, yet it is still met with a mixture of ignorance, prejudice or indifference.
What is autism? For the person with autism, the world is a place of anxiety. It is a great swirl of people, places and events that make little, if any, sense. A person with autism can be terribly isolated from people around him or her, a stranger to the social skills we take for granted, of how to relate to other people or read their emotions.
Because it's a spectrum disorder, a person with autism can have anything from mild symptoms, such as a literal approach to language, making it impossible to follow the subtleties of conversation, to being unable to speak, living in a state of lonely despair and agitation. Some people with autism can lead independent lives, others may never be able to care for themselves.
We created Autism Speaks in the US in 2005 to change the future for all who struggle with autism. Our main objective was to raise awareness. We knew that once autism entered public consciousness, it would generate the funding necessary to drive research into the unanswered questions about what causes it and how we might alleviate its effects.
In three years of aggressive campaigning, we have made great progress in increasing awareness. We have raised more than $110 million for scientific research. With other organisations, we achieved passage of the Combating Autism Act 2006, a $900 million Bill that allocates funds directly for research and services.
Similar action is needed in Britain. That's why I was eager to accept an invitation from TreeHouse, the national charity for autism education, to give its annual lecture yesterday. We are eager to support TreeHouse's work. The need is particularly urgent in the UK - the incidence of autism is greater here than in the US (where it is 1 in 150), and is rapidly increasing. Not only is the disorder devastating the lives of British families, it is becoming a growing burden on the health system and the economy.
A study last year by the Foundation for People with Learning Disabilities calculated the lifetime cost to society of caring for someone with autism can be as much as £4.7 million per person. That includes everything from direct medical expenses and the provision of special education, to the hidden costs of childcare, adult care in later life, respite and family care, as well as the lost wages for carers who have to give up their careers.
But the numbers do not capture autism's overwhelming emotional burden. The study found that the stresses of caring for children with autism are much greater than the pressures of bringing up those with with other developmental disorders. The divorce rate, for instance, is much higher. Families can be ground down by the need to give constant attention to their child and struggle with a welfare or education system that is often unresponsive to their needs.
Despite these thousands of private tragedies, support is hard to come by. Less than 0.5 per cent of public medical funding goes to research, prevention and treatment of the disorder. This makes one of the fastest-growing and most prevalent childhood disorders in the UK, the country's least funded.
Awareness about autism and increased support for early intervention are the keys to changing this. As awareness grows among policymakers, doctors, carers, teachers and families, so will compassion for people and families living with autism. This will help the money-raising efforts that can fund research, early diagnosis and more consistent early intervention - which can lead to a more fulfilled adult life - and ultimately, successful treatments.
We can begin with the three-pronged approach of education, legislation and research that is working in the US: educate the general population as well as carers and teachers focused on young children; lobby government to increase funding for research; and demand and develop improved interventions for those with autism. We must ensure that people know about and use these tools to give children the best possible shot at living functional and rewarding lives. We know that early diagnosis (as early as the age of 1) coupled with immediate acute therapies (speech, occupational and behavioural) can allow up to half of children to start primary school with their peer group with some special help. Starting with diagnosis, every child with autism should have access to applied behavioural analysis (ABA), at present the only therapy regimen widely considered to be effective.
We must press for the passage of legislation, such as the Autism Bill, presented in Parliament this month, that will ensure that the needs of people with autism are not overlooked. The Combating Autism Act in the US creates a precedent that transcends party lines, which the UK should follow.
Finally, we must increase and improve information on the prevalence of autism in Britain. Not only will it provide more clues about the causes of the disorder and create opportunities to advance new therapies and treatments, but it will also drive funding and awareness.
We know it is possible to lighten the burdens of autism for individuals and families living with the disorder. But hope and progress can only come through public awareness, swift and substantial legislative action and more research into the mysteries of one of the most devastating childhood disorders of our time. Autism speaks. It's time for the world to listen.
Bob Wright is a former chairman of NBC. With his wife Suzanne, he is co-founder of Autism Speaks. For free resources to help everyone from teachers and medical professionals to families to cope with autism, go to www.autismspeaks.org
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I have a son aged 18 with severe autism, he is happy, healthy and totally unaware of the complexities of this world. Who are we to want to bring them in 'our' world when we do atrocious things to each other and the world. maybe we should learn from them instead and enjoy the simplities of life.
T.D.F, Worcessteshire, England
I was diagnosed with severe infantile autism and somehow through tonnes of love, care,attention and being given responsibilties has made all but a few "symptoms" go away.
Archie Drummond, Street,
I have Asperger's Syndrome, I'm productive, I have two close friends, a social life and I'm happy. I am not a tradgety.
Shelby, Langley, Canada
It is about time all spectrum disorders came under one umberella as in FAS Disorders early intervention and preventions should start eary. N.Ireland Gov seem too be going in the right direction see webb FASawareUK. Training staff for these children should be a specialization as in paediatrics
Bill, Cheadle, Cheshire
I have Asperger syndrome and wouldn't want to be cured if it were possible (neither do many so-called lower functioning autistics). I get sick of the constant use of the word 'tragedy'. Autism has lots of positives as well as negatives! Early diagnosis and appropriate support are vital, though.
Richard Chandler, Abbots Langley, UK
My sister died at the age of forty three from a heart attack due to the stress of having a son with 'asperger type symptoms' WHICH WERE NOT DEALT WITH PROPERLY!!!
This government do not take Autism type disorders seriously leaving parents and families in REAL turmoil!
K. Harris, Dudley, England
Bob Wright says
In three years of aggressive campaigning, we have made great progress in increasing awareness. We have raised more than $110 million .
Similar action is needed in Britain.
I have been campaigning for 13 years for autistics but there is denial of vaccine damage by Government Media
Joan Campbell, Glasgow, Scotland
Am I wrong but I got the impression that Bob Wright thinks that we in the UK have done nothing regarding awareness etc. It is a good article but I found it a bit patronising. I cant help it if my words have fallen on deaf ears. I shall always speak out but there is a cover up of damage n denial
Joan Campbell, Glasgow, Scotland
I am so proud that my parents are working so hard to change to raise awareness and change attitudes about autism. I do want my son cured. Christian is not quirky or mentall ill- he is very sick. My son lost all his speech, developed horrible colitis, a myriad of severe food allergies and seizures.
Katie Wright, NY, NY, USA
The only people who suffer from autism are the ones that develop mental health problems as a result of being unsupported.
alexis, nr Bristol, uk
i have been on the gluten/milk/aspartame/msg free lifestyle for over 3.5 years now. Nothing else helped my Aspergers before this intervention. i also take supplements.
i only wish for the negative side of my Aspergers to go away.
i am also "too intelligent to have problems"
Alexis, nr Bristol, uk
All provision for under 5s should be supported in accessing autism services. Many private daycare do not know what to do, so the child arrives in full time school without support, it can then take a few weeks before teachers realise it's more than settling in issues.
Diana, derby, uk
Autism is not highly prevalent in the adult population, except in young adults. To discover why autism is on the rise we need to look at environmental and iatrogenic triggers, and not persecute anyone who tries to raise the issue. Genetics cannot provide the answer to this on its own.
John Stone, London, UK
Because autism is not "curable", parents are desperate to do anything to help, so snake oil salesmen succesfully promote ineffective treatments such as chelation and "DAN" dietary manipulation. These things do not work, and any idea that they do is a combination of coincidence and wishful thinking.
Bugsy, Preston, UK
Phil H, many in the UK do eat badly, but my daughter has always had an excellent diet - and Asperger's Syndrome. She has a 2:1 from a good university, but finds it hard to get work at all, still less appropriate work. Childhood was relatively easy; there's no help for intelligent, autistic adults.
Gill, also from Southampton, UK
I worked with a 20-year old that I was convinced had undiagnosed ASD. She was impossible to work with. Professionals couldn't help us without her acknowledging the problem. She wouldn't and ended up being sacked. I feel sad that she is unlikely ever to hold down a job if she won't accept help.
Carmen, Wolverhampton,
The second you label your children they are stigmatised and it will not change,-you wreck lives by labelling someone as potentially disabled. I have a non speaking dis-abled child, I have no wish to label him, doing so damaged our family very badly and I'd urge you to desist this out-dated practice.
E Robillard, London, England
Ben - I had an autistic boyfriend once. If I said "there were loads of people there", he'd question me about whether I saw them being unloaded in trucks or not. If I said "ooh, I'm freezing!", he'd call me a liar again, just as you are saying I'm being dishonest. The only wars were created by him
Helen E., London, UK
Does anyone know of any tools or groups to diagnose autism in adults? I can't find any information about how to help those adults who think they might be somewhere on the spectrum and don't know how to handle it, it's all focused on children.
Karen, Putney, UK
I agree with Ben from London. As a parent of an 8 year old child with Autism, I have no desire to cure him. He is logical, non-judgemental and sees obvious answers to dilemas that I will ponder for days. Yes, he often displays very odd behaviour - but then so do many of the "normal" people I know.
Georgina, Derby, UK
"Autistics need several things but they don't need to be treated or cured"Ben, London Autism is a spectrum; I don't think you mean all autistics don't require treatment; that is facile and ill-informed. there may be some truth in this stance with some autistics, in most cases it is incorrect.
stephen, Bromley,
It's very easy to be glib about a situation when you're not in the middle of it. I am.
steve, london,
there is no doubt in my mind it is due to the ever expanding
use of chemicals, pesticides and plastics. dont use plastics
to feed yourself or your babies they leach chemicals into the food.
colin c, Beverley. Yorkshire. , England
Autistics need several things but they don't need to be treated or cured. "Normal" people are the ones who are too emotional, irrational and illogical at speech, being pointlessly subtle and frequently dishonest. Such people give us wars and credit crunches.
Ben, London, UK
From a parlimentary report I found, it appears that the increase in prevalence in the UK is largely due to increasing awareness of the condition and changes in diagnostic pratices, and that autism, particularly conditions such as aspergers generally have a lower profile in the US.
Gemma, Burton,
John form Southampton,
Perhaps the answer to your question lies in the first post (Ana from Phoenix) - diet.
I have no idea if this could be true, but I do know that an awful lot of children in this country have appaling diets.
Phil H, Hurstpierpoint, England
It so frustrating to have what appears to be a perfectly happy normal looking child and yet part of their brain is shut off to you if you could just break down the barrier as I did with one son who had selective mutism,like autism this masks an artistic ability you loose if dealt with too severely!
Dave Farmer, Broxbourne, England
If we could move to the view that autistics need 18 years of education in emotional spheres, whereas so-called 'normal' people need educating in analytical ones, then rather than seeing autistic spectrum as 'abnormal' we might see it as part of a multidimensional continuum.
Educators arise?
Rhys Jaggar, Leeds, UK
I'm intrigued by the statement that the UK has a much higher prevalence of autism than the USA. Anyone know of any reasons for this?
John, Southampton, UK
It is very good to see this attitude.
The Autism and Alzhiemer's Folks continue to lead the way in learning and using the research new and old. What they find can be used by all the rest of us brain different folks.
Thanks. :)gwenith (20 year survivor of a ruptured brain aneurysm.)
gwenith, Casper, usa
The only politician that talks the talk and walks the walk on special needs children is Sarah Palin. The media will not give her credit and will end up hurting these children. Shame on them.
Bob Bartlett, San Rafael, USA
Mr. Wright,
You did not mention biomedical interventions and their importance in treating autism. After my daughter was diagnosed at age 8, I change her diet and started her on supplements, with the guidance of a DAN! doctor. Her improvement was dramatic and she is now considered fully recovered
Ana A., Phoenix, Az, USA