Some autism research from Cambridge University, England…
New research brings autism screening closer to reality
Call for ethics debate as tests in womb could allow termination of pregnancies
New research published today will bring prenatal testing for autism significantly closer, prompting experts to call for a national debate about the consequences of screening for the disorder in the womb and allowing women to terminate babies with the condition.
More here >>
This is a very sensitive subject and an issue that needs very careful consideration. While I am “pro choice” regarding the issue of abortion or termination of a pregnancy, I find it difficult to accept the idea of screening for autism where abortion of possibly autistic foetuses is the most likely outcome. Assuming a pregnancy is otherwise desired, how can a termination, based on the “likelihood” of the child being autistic, be justified? After all, autism manifests as a spectrum with some individuals being highly intellectually gifted and talented, many of average to above average abilities and intelligence, and others with much greater challenges mentally, physically, emotionally and socially. And, assuming the level of autism could be accurately detected, just where along the spectrum would the cut off be for deciding whether a child is “worth” keeping or not? There’s just too many questions that can’t be answered. Early detection could of course also be used for the good of the child, alerting parents to the need for early intervention and the possibility of special education needs etc, but how many prospective parents would choose termination out of fear of the unknown or base their decision on incorrect assumptions about autism and autistics? So many lives, so many people like me and my gifted and talented sons, and maybe my husband, might just never “be”.
Below is an article by Anya Ustaszewski, an adult on the autistic spectrum, expressing her views on this subject. It really struck a chord with me as it expresses a lot of my own sentiments.
I don’t want to be ‘cured’ of autism, thanks
Discussion of prenatal testing hasn’t included the people it plans to eliminate: society disables us more than autism ever could.
Listen to us. Get to know us. Respect us. Include us. Don’t put all the onus on us to fit in to your world – meet us half way. And most of all, don’t eliminate us just because we’re different.I am not a savant or genius. I’m no good at maths or science, so I don’t meet the criteria of the special gifts that might be lost if prenatal testing enabled parents to terminate foetuses deemed likely to develop autism. But I find it disturbing that no one yet seems to have seen fit to seek the opinion of individuals on the autistic spectrum.
As someone on that spectrum, I strongly oppose any kind of “cure” for autism; I also oppose prenatal testing and the eugenic elimination of autistics, as well as any research that could lead to these outcomes.
The autistic rights movement, which is allied to the wider disability rights movement, believes that people on the autistic spectrum are disabled more by society than by their autism. Like many members of this movement, I consider autism to be a part of natural human variation that should be accepted and respected, as with any other human difference.
Sadly, autism is often portrayed as a tragedy for both individuals on the spectrum (who are often said to be “suffering” from autism) and also their families. Interestingly, the organisations and individuals who disseminate and promote this image tend to be celebrity-seeking professionals who are seeking a lucrative “cure” for autism, or families who due to inadequate support and access provision see autism as the enemy, the cause of all their problems and something that should be minimised or eliminated.
Far more time and attention is given to parent-led organisations (in particular the National Autistic Society) and very little to user-led groups. The autistic rights movement is almost completely ignored.
Professor Simon Baron-Cohen wrote in a recent article:
Caution is needed before scientists embrace prenatal testing so that we do not inadvertently repeat the history of eugenics or inadvertently ‘cure’ not just autism but the associated talents that are not in need of treatment.
So my autism should be “cured”, but the bits that society thinks it can find a use for should be kept? I find this incredibly insulting. My autism is part of who I am. It is not something “extra” that can be taken away from me to suit the agenda of an intolerant society. My abilities, challenges and perception of the world all go hand in hand. If I were to be “cured” of my autism, the person that I am would cease to exist.
To be frank, it makes me quite angry that little has been done to address the challenges autistics face. The world can be a frightening, painful, distressing and confusing place if you are autistic. There are, however, adaptations that can be made to the built environment, to ways of communicating and to society’s attitudes that can go quite some way to relieving these challenges.
Despite the Disability Discrimination Act, little has been done to help make society more accessible for autistics. Legislation is mainly aimed at people with mobility impairments and those who are visually impaired or hard of hearing. When it comes to the autistic spectrum, the DDA is only of very limited use.
There are many things that can and should be done: they include changes to legislation to ensure that buildings are “autism friendly” such as a legal requirement for low arousal design, changes to noise legislation to reduce the sensory overload that is often experienced by autistics, especially those with hypersensitive hearing. Less visual clutter, better anti-discrimination laws and a legal right to assistive technology and communication devices would also help us.
The government has done little to improve access for autistics, or to change negative attitudes towards us. Instead, officials, professionals and parents alike are ready to consider eliminating us from existence.
What kind of a message does this send? Conform to neuro-typicality or we will eugenically wipe you out?
Autistics have not been listened to or given a proper chance to be accepted, understood and to thrive. Let’s face it, it’s much easier (and probably cheaper) to get rid of us than to support, help and (dare I say it) embrace us. So I think it imperative that individuals on the autistic spectrum are involved at all levels in the debate on pre-natal testing.
In his excellent and moving essay Don’t Mourn for Us, Jim Sinclair writes:
When parents say, ‘I wish my child did not have autism’, what they’re really saying is, ‘I wish the autistic child I have did not exist, and I had a different (non-autistic) child instead’.
This is what we hear when you pray for a cure. This is what we know, when you tell us of your fondest hopes and dreams for us: that your greatest wish is that one day we will cease to be, and strangers you can love will move in behind our faces.
Rather than pursuing a “cure”, or subjecting autistics to “therapies” whose goal is to make them appear and act as neuro-typical as possible, the government professionals and parents should devote time, effort and funds towards supporting autistic individuals in developing strategies to manage the difficulties they face, to improve their skills and to make progress and fulfil their true potential.
It is also important to work towards curing the sometimes-distressing co-morbidities of autistic spectrum differences, such as intestinal disorders and epilepsy.
Most of all, society’s attitude towards autism needs to change. Our communication style and any non-harmful autistic behaviours should be respected and accommodated. The physical environment should be adapted to be more accessible in order to allow us realistic opportunities for inclusion, and to enable us to be as independent as we can.
Listen to us. Get to know us. Respect us. Include us. Don’t put all the onus on us to fit in to your world – meet us half way. And most of all, don’t eliminate us just because we’re different.