Page last updated at 07:23 GMT, Wednesday, 7 January 2009

Scrubbing up: Your comments

In this week's Scrubbing Up Professor Simon Baron-Cohen from the Autism Research Centre at Cambridge University warns us to be cautious when considering a prenatal test for autism.

A prenatal test for autism, should it be developed, would allow couples to choose whether to have a baby with the condition. Professor Baron-Cohen believes that if a test were to be available it could lead to the loss of many talented people.

What do you think? Here are some of the comments you have been sending in to this week's Scrubbing up.

YOUR COMMENTS

As the parent of an autistic child I have to be biased don't I? No matter what the cost in terms of normal family life, being able to eat out, have holidays, sleep more than four straight hours and the myriad other ways it affects ours and his life. He is just amazing, trying to see the world through his eyes gives us perspective we might never have had. I can honestly say he is a blessing. Were there a test I wouldn't take it, but I wouldn't ever judge someone who did, you cannot understand the impact of this condition unless you live with or alongside it.
Jacquie, Canterbury, UK

Autism is a spectrum and as such can run from the high functioning, "savant" autism to the low functioning end. I highly doubt a pre-natal test could differentiate between where a person would end up on the spectrum as I believe early diagnosis and early intervention can greatly improve where a child will end up on the spectrum. As the mother to an autistic daughter I find the idea of screening in pregnancy for autism to be, at the very least, a little frightening. Autism isn't a life threatening disability, and although I do not deny it can be very challenging for parents to live with on a daily basis, I really don't understand why there is a need for screening for it in pregnancy.
C Doran, Edinburgh, UK

People with Autistic Spectrum Disorder vary in so many ways. How will they screen for the severity of a child's autism? Will this make a difference regarding termination? At what point would it be considered acceptable to terminate? Many people on the autistic spectrum grow up to have successful lives and careers. My son has Aspergers and has many challenges, but he is learning how to overcome his difficulties. The only benefit I can see is that if we had known from birth that he was on the autistic spectrum, we would have had more understanding of how best to help him. I hate the idea that someone may terminate just because their child is not the 'social norm'. What is wrong with being a bit different anyway?
S E I, Vancouver, Canada

I have two children with Asberger's. My son sat GCSE Maths two years early and got a B at age 13. Yes, life is very tough, it's a hidden disability but our problems come from 'normal' people not understanding. If we valued the autistic traits then we would see ASD in the workplace more often and in society at large. I'd rather see screening for life limiting severe illness funded, or to help study neural paths to improve the life of people with autism. Or better, to fund the charity based services who fight to improve the lives of families affected by autism, rather than relying on grants and fundraising.
Lisa, Middlesborough

I am concerned that the detection of autism will encourage abortion. I know families may need extra support but areas of autism can give such brilliance. Because an individual doesn't fit neatly into society they are deemed excluded, where does it stop? Where does it end?
Trisha, Surrey

Pre-programming humankind is not only dangerous, it's unethical. Are we saying we have the right to choose the characteristics of our children? In which case, how far does that go? The very concept that we can pick and choose whether or not to have a child that may be in some way disabled is abhorrent, because by saying so we are also saying that those around us who are disabled don't actually have the right to live, either.
Jo Holloway, Norfolk

As someone with Asperger Syndrome studying for a PhD, I would echo Professor Baron-Cohen's remarks. Many of the greatest minds of the human race - those who have defined the technological age which supports our way-of-life - likely lived on the autistic spectrum. The world needs geeks. However, living with such conditions comes at a price for the individual concerned, and society has a responsibility to ensure such people are supported in their development in order that they can make the most valuable contribution possible. I doubt many people with Aspergers would wish to be 'cured' of their condition, I certainly wouldn't , particularly if it came at the cost of the one thing that we do really well.
Anonymous, Oxford

It is important to remember that an increased risk of autism does not necessarily mean the child will go on to develop autism. And how great a likelihood of autism would be enough for doctors to encourage parents to decide whether or not to have the child? The fact that I have never seen this specified in a news article is worrying. And it's not that I am unsympathetic to people who have autism in their family and who struggle to deal with it - I have an austistic twin so I know it can be difficult. But my sister brings a lot of joy into my life and I'm proud to be related to her! I think the main problem here is society's attitude to autism - particularly that of the health service - and the availability of such screening makes it less acceptable for newborns to have flaws or disabilities of any kind.
Caroline, Manchester

If the ability of detecting and eradicating autism had existed a thousand years ago the world would now be a very different place. There would be no Newton, Mozart, Beethoven or even Einstein. If fact I very much doubt that society would have developed to the point at which, ironically, it could detect and eradicate autism.
Jacob, London

I have worked with adults and children with Autism Spectrum Disorder (including Aspergers and severe classic Autism). They are lovely people, they just think differently from "normal" people. They need to be spoken to logically and with no ambiguity, and they like to arrange their lives that way too. So if we start aborting foetuses who think differently from "normal", what will we abort next? People with mentail illness? People who are at high risk of Depression?
Alex, Cambridge

Let's look at the numbers realistically. For every mathematical genius, there are countless numbers of children and adults with autism for whom life with inadequate services and a niave general public is nothing short of barbaric. Try walking in their shoes for a day before we mourn the loss of these "geniuses" and maybe stop to think that along with academic brilliance comes a loneliness that is with them constantly. Autism isolates both sufferer and their families and, if a cure can be found, then let our scientists use their abilities to help this condition.
Eki Platts, Omagh, Co-Tyrone

This is definitely a slippery slope to be going down - I have Asperger's and more often than not I'm happy enough as I am. As others have said already, if we were to start with autism, what would be next? As a human race I believe we should celebrate our differences - our diversity is what makes us individual and special and it is naive to want all of us to conform to a set of general standards.

Yes sometimes we suffer and yes life is often a struggle but can anyone else in the human race tell me that that is not also true for you?
Matt, Doncaster

'Autism' is not a single condition. Autistic symptoms have a range of possible causes. Many children show autistic symptoms because they have sensory processing abnormalities which can and should, be treated and supported, but which are generally overlooked. Simon Baron-Cohen is right to point out that people with autism have made a disproportionate contribution to technological advancement - they are a resource, not a liability. We need to get our act together on this.
Sue, Shropshire

Having an autistic child is tough. I have eight years of experience and it is wearing, frustrating and often depressing. Repetition, inflexibility, 'meltdowns' and the impact on siblings should not be underestimated or glossed over.

We shouldn't abort an 'autistic foetus' for that reason but if society benefits from such people then it should provide better support for their families. I'm not convinced that 'inclusive' education is appropriate but there are few genuine alternatives. Respite support for parents and siblings is practically non-existent and our adult-oriented society is largely intolerant of 'difficult' behaviour in public settings. The issue is not autistic people - it is society's response to them.
Ken, Brighton

As the mother of three children, two of whom have Aspergers syndrome, this is obviously of great interest to me. One of my affected chilren has also been diagosed as dyspraxic and has really quite severe mental health problems, resulting in self harm and significant depressive symptoms. Clearly this is very distressing for him and us, but, given the chance twelve years ago, would I have chosen to end the pregnancy? I know that I would not but I cannot deny the suffering I see him experiencing and also the anxiety that his sister, also diagnosed with Aspergers, may also develop similar problems.

It would be a tragedy for us all if the ability to remove such people from our midst led to a lack of respect for those who live with autism and undoubtedly contribute their own gifts to their families and the wider world.
Janet, Blyth, Northumberland

I am truly astounded that there is talk of a prenatal test when all the professionals I have met have said they aren't able to diagnose my son and have put me on a two year waiting list to see someone who can.

The spectrum is so varied with so many different needs, how will this help a mother know what to do if she is told her unborn child is 'at risk' of something that is not clearly defined?
Lorraine, Portsmouth

Autistic spectrum differences become disabilities when they clash with the rigid, uncaring, judgmental aspects of our society. A kind, open and supportive community will find that people who experience and process the world differently are an asset and not an inconvenience. Globally we face some huge challenges over the next few decades, and it's a safe bet that the scientific and medical advances we're hoping for will not be stumbled upon by average folk, but by exceptional folk, including those who were geeks and nerds and shy and obsessive about their dinosaurs or computers. Of course not every person who has a diagnosis of ASD is a savant, but a society which values and fosters difference is surely much better positioned to survive this century than one which seeks uniformity and rejects people for being inconveniently un-average.
Lindsey, UK

No, I am not in favor of prenatal testing for autism. I am autistic myself with Asperger Syndrome. The risks outweigh the benefits because you will be erasing a entire set of people living on this earth. People who could possibly be helped will no longer have the option. Plus, prenatal testing for autism will be misused because everybody will want the test and erase us.
Jason, New York, USA

I'm a woman who was diagnosed with Asperger's syndrome in my mid 20s. Having spent my entire life up to that point struggling to be "normal", it was immense relief to discover that I was actually perfectly normal-- for a woman with Asperger's. Prenatal testing is an ethical minefield regardless of the "disability" being tested for. Anyone who says parents should have the choice is basically denying my, and every other differently-abled person's, right to exist. We may not be like you, and you may have to fit ramps for some of us, but that is not a reason to deny us our right to exist. It's not disability that disables, it's lack of equality and access.
Sue Scottley, London

So the problem with detection prenatel autism is that we might lose brilliant mathematicians? This is what is implied. When will people stop portraying 'autists' as talented, brilliant, geniuses? I know of many 'autists' and none are particularly clever. My son is 'classic' autistic. He has no talents but he is funny, sensitive and a great kid and everyone loves him. If a prenatel test is offered then parents need to know that they are not dealing with a genius feotus, they're going to have a child which is, we hope, what was intended.
Matthew, Streatham, London

I don't have a problem with pre-natal testing. I do have a problem with Professor Simon Baron-Cohen (who really should know better) re-inforcing the widely held and wholly inaccurate myth that all children with autism have "special skills". Autistic savants are as rare as Downs savants yet it is because of the perpetuation of this myth that almost everyone says to me "oh, what's his special talent" as soon as I tell them my son is autistic. It drives me mad!
Jill, Derbyshire

My son has Aspegers Syndrome, he can be difficult but it alo makes him what he is. I wouldn't be without him. If autism and Aspergers are in the genes then clearly subsequent children could also have the traits. Can we not just let people be themselves?
Sarah, Peterborough

As a parent of a child with autism, I find it really difficult to accept the concept that someone could potentially terminate a child who may be diagnosed with the condition. We take great pleasure in our son - he is a loving little boy, who whilst he may be slower in social development than neurotypical children, is a joy to us. Our son (whilst difficult at times) shows many characteristics, that if embraced by wider society, would make the world a much better place.
Andy Thornton, Cockermouth, Northumbria

I have been told I am on the autistic spectrum. This article concerns me and like it states, it opens up all sorts of questions about eugenics and what is good or bad for society (that debate is not for this forum). After a very slow start to my education, I completed a PhD at a good university, worked at a highly regarded research laboratory in the US and now am a director of a international IT company based in the city.

There would be no Newtons or Einsteins if this testing was implemented routinely.
Anon, London

The test and the treatment if available should be adapted without any reservations. Autism is a disability and apart from a few autistic savants majority of autistics are not productive and are a burden to the family and the society. We enjoy working with our son who is autistic and also has severe learning disability (and in addition he also suffers from epilepsy). He is a cheerful young person and we would like him to be a normal young adult like most others. His autism had a profound effect on our family. My wife (a doctor) had to devote all her time to his educational needs. Our son's autism has affected our family in so many ways and we don't realize the things that we miss unless we start comparing with others with normal children. This test is a great way forward and it has to be taken up as a top priority as the incidence of autism is on the rise.
Rkrao Rebbapragada, Cambridge

I am the mother of an autistic 16 year old. I would never have aborted her if I had known she was autistic but if someone had offered me treatment for this, I would have hawked my soul to get it.
Anne Marie Kane, Hamilton

I am absolutely shocked at the idea of prenatal screening for autism. I have a son with Aspergers. He is wonderful, intelligent, sparkling, noisy, frustating, interesting, passionate, curious but most of all he is my beautiful, fascinating, child. I would never have had a prenatal test for autism let alone accepted the chance to abort the pregnancy. I think that this is the most cruel 'advance' in medical testing I have ever heard. I would not change my son for anything. He is fabulous just the way he is, thanks very much.
Melanie Ann Colquhoun, Aberdeen City

I am pregnant now and I am not having any of the tests offered. This is a personal choice because I feel that I would be willing and able to cope with a child of any physical and mental ability or disability. I am prepared for that risk. I also think it is a shame to sanitise our species and to aim only for perfection. However I understand that this is not the same for all and some feel that they cannot cope with having a child who is less than perfect or who is disabled. It is a personal choice but it is one I hope we all consider fully and with all facts available. To remove any apsect of our natural human condition means we lose something special. I hope this test is not too quick in ariving on the scene as to give us all long enough to understand what Autism can mean in a positive light.
Samantha, Bristol

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