Possible test for autism raises calls for an ethical debate

New research by British scientists means prenatal testing for autism is a possibility, but has evoked calls for an ethical debate on the issue.

A study by researchers at the autism research centre of Cambridge University has found that high levels of testosterone in the amniotic fluid of pregnant women was linked to autistic traits, such as a lack of sociability and verbal skills in their children by the time they reached age eight.

The research team followed 235 children from birth to the age of eight and the prenatal tests revealed a more than 20-fold variation in testosterone levels between different women.

After the children were born they were observed and tested on four occasions during their first eight years of life.

The groundbreaking study has raised the possibility of an amniocentesis test to detect autism - the same procedure is used to test for Down's syndrome - and this could give couples the option to terminate the pregnancy if an autistic disorder was detected.

But such a test would be is highly controversial and raise ethical issues for many.

Autism is a spectrum disorder famous for mathematical and musical savants as well as children who are unable to communicate and spend their lives having to be cared for, often in an institution.

Professor Simon Baron-Cohen, director of the research team believes society now needs to consider it's position on the issue and decide if a prenatal test for autism is desirable - he says a debate is needed on the issue as autism is a different kind of condition from Down's syndrome.

He says the research could lead to treatment for autism and some researchers or drug companies might see this as an opportunity to develop a pre-natal treatment as there are drugs that block testosterone.

While some people with Autism and Asperger's disorders are at the very high-functioning end of the spectrum, with significant powers of focus and concentration and a love of systems which may lead to extraordinary abilities in mathematics, far more have severe learning difficulties which have a profound effect on everyday life.

Professor Baron-Cohen says a prenatal test would not be able to distinguish which end of the spectrum and ethically the same issues apply wherever the person is on that spectrum. Professor Simon Baron-Cohen is one of the world's leading experts on autism.

The National Autistic Society however says some of its members think a test to predict autism could be useful in helping parents prepare and get support for their child as currently many children are not diagnosed for two or three years, which is a source of frustration, but none have said they wished it had been possible to have a termination.

The National Autistic Society says it is really important that the autism community is involved in developing research priorities in this area, as while there could be some advantages and benefits in recognising autism early, there are also concerns.

The Society says everyone with autism has the potential to make a unique and valued contribution and often it is not the autism which is a problem but a lack of services and support.

Vivienne Nathanson, head of ethics at the British Medical Association says a debate is needed over testing for a disorder which is life-limiting in terms of opportunities and experience, rather than life-ending and also over the more complicated ethical issue of treatment in the womb.

Autism is characterised by an inability to empathise and interact socially and an unusual focus on numbers or lists - both genetic and environmental factors are thought to contribute to autism.

Comments

  1. Cornish Cornish United Kingdom says:

    Regarding the amniocentesis prenatal test for autism...will Autistic mothers be given the same opportunity to test to see if they are carrying a Neurotypical (non autistic) child, and if so, will it be acceptable for that mother to terminate that child?! I am a specialist in Asperger's Syndrome, I am Aspergian myself...after fifty years of studying the Neurotypical population, I can conclude that the NT's are as, if not more, disabled than the Autistic population (just turn on any 6-o-clock news, and see for yourself). If the percentages of population globally were reversed...and there were less than 1% of NT's on the planet...the NT's would find themselves in the same position of disability amongst a majority AS population as most Autistic people find themselves in today. This again is another example of the utter arrogant attitude from the NT population, and the assumption that they are the pinnacle of Gods creation. They are not, and this is totally unacceptable!!!

    • Kat Kat United States says:

      Thank you Cornish for the comment. I am mom to an Aspergian son. I wouldn't have understood my choice had I had such a test. He is fantastic and the best thing to happen to his sister, his father and myself. He's creative and thinks differently than a NT. Would I have been pressured to abort him by some? I am now getting my PhD in Psychology, and specializing in this unique population.

  2. scar scar United Kingdom says:

    I hope to god they do develop a prenatal test that determines whether a child will be autistic or not. My brother is autistic and non-verbal, incontinent and self-harming. If there is no prenatal test by the time I am ready to have children, I will not have children. I will not knowingly inflict a terrible condition on an innocent person.

    • Carolina de Vos Carolina de Vos Australia says:

      Sorry to hear about your brother. I got two sons -both autistic. One is almost 5 he is now on the mild scale...the other one 2 and 2 months and we still don't know which end of the scale. I am aware that autism can take you to such a dark place as the one you describe for your brother. I do feel for you, your family and for him. I do hope they will develop this test for those who are at risk. I think a lot of people who judge have not been in this situation themselves.

  3. Texan Texan United States says:

    What a horrible idea! It is unconscionable to even consider offering such a test when the cause or causes of autism have not been even partially established. Also, it is completely inaccurate that most autistics are low-functioning -- those are the ones everyone notices. The rest of us - the majority - are married, have satisfying jobs, and enjoy life. Don't believe Autism Speaks' propaganda.

    The only possible good use of such a test would be to ensure that autistic couples are going to have an autistic child. I would be horrified if I ever had an NT child, and wouldn't have the slightest idea what to do with it. I would give it up for adoption to an NT couple who would want such a thing, I suppose.

    Scar, don't have children regardless of the existence of a test. Don't even adopt. Anyone willing to murder someone else simply because they cannot comprehend another's way of thinking does not need to be passing on such fear and hatred.

  4. Carolina de Vos Carolina de Vos Australia says:

    I am a mother of two autistic children. One is high functional but oh boy we went through HELL and absolutely HELL until he took off. And even now there is still such along road ahead. My other son seems more severe though still pretty young -2 and 2 months. Just hoping and wishing he will do as well as his brother. But we do NOT know as of yet which end of the spectrum he will turn out to be. My everyday life SUCKS with so much uncertainty and the question what would happen to my children if I am gone?? and when Ill be gone if they will be unable to care for themselves. I used to believe in God and I was anti abortion etc but you need to be THERE to truly understand. I am not going to have another child but if this test would have been available I would have DEFINITELY had it done with my second son. Whether I would have terminate prob not but at least I least I could have prepared myself, I could have seek for early intervention at 8 months instead at 2 years etc. People are not in this situation shouldn't even comment because they have No idea what is like

The opinions expressed here are the views of the writer and do not necessarily reflect the views and opinions of News Medical.
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