Genetic Screening for Aspergers in the UK

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Genetic Screening For Asperger's Syndrome is happening now in the United Kingdom:

http://the-newrepublic.blogspot.com/200 ... or-as.html

Sorry to be the barer of Bad News, but this is for real. So what do we do?

Screen Genes topic

An idea whose time has NOT come--yet.

Such a test would work with probabilities--never 100% certainty.

Making a kid is a risk. Even designer babies with Nobel sperm are not all potential prize winners. Even prize racehorse sperm/eggs does not guarantee an ultimate winner, though there are many winners whose parents are in the winners circle.

I suppose pregnancy termination is what is on people's minds. But I believe AS will always be with us, no matter what. It is all a matter of probability, the optimistic kind.

My people on this website are worried about having children because they fear their own children will be autistic. If autistics are worried about this then you can see why anyone else might be. Given the high suicide rate of autistics, many autistics believe having autism is worse than not existing. As someone who would ultimately like children, it is a very difficult choice.

There was no "news" there - what there was, was a blog post laden with assertions and assumptions.

First of all, there can be no "genetic screening" for ASDs - there is no single genetic trigger, and very few of the genetic triggers have even been identified. (The most common, found by using data from Iceland, where the government apparently takes routine genetic assays of its citizens, is found in approximately 1.6% of autistics. That's less than two of every hundred people on the spectrum.)

Second, it provides no data to suggest that the UK government is in fact engaging in any such activity. No links to reputable news sources, no press releases, not so much as an outraged letter from someone told to abort a child carrying this supposed "autistic gene".

No, all that is there is the tale of the mother of one autistic young lady, and the author's fear that some nebulous "them" will try to remove us from the gene pool. (Of course, there's one other problem with that - what kind of people build the machines that can assay an entire human genome, and what kind of people spend enough time learning about this to interpret the results? It ain't just the NTs, kid. Think about it.)

Umm, a press release?

[i][b]"some nebulous "them" will try to remove us from the gene pool"[/b][/i]

Well I don't know how else to you would describe the refusal of egg donation? Is that not selecting out anyone who might be on the Spectrum?

And the boffins who make this technology - yes they would raise an eyebrow (Spock-like) at the thought of all the Systematisers being removed from the gene pool.

Did you watch the embedded video? Every single one of those people would've been judged by some faceless and anonymous doctor as unfit to be given the chance of life. Go back and look at it. Should these people never have been born... And in the words of someone much more learned than me:

[i]Professor Michael Fitzgerald, Professor of Child and Adolescent Psychiatry at Dublin's Trinity College, recently wrote

We have entered the Age of Autism. The 20th century was the age of psychoanalysis, with its catastrophic and inaccurate view of autism and its false psychogenic theories of autism.

[b]Massively increased by research on autism
[/b]
The proponents of these theories have never apologised for their theoretical errors. As well as the improved and improving treatments of autism that will occur in this age of autism, our understanding of Neurotypicals will be massively increased by research on autism.

[b]Peek times for persons with high-functioning autism
[/b]
The great developments of the 21st century will be driven by persons with high-functioning autism, although this has been true since the industrial revolution and the age of Enlightenment. These were peek times for persons with high-functioning autism.

[b]Second World War was shortened by almost two years
[/b]
Indeed the Second World War was shortened by almost two years by a person with high-functioning autism, Alan Turin, who was involved with breaking the Enigma code...[/i]

Lives not worthy of living?

I just watched the video and feel some comments should be added. George Orwell autistic? The man is my idol but there is no chance he was autistic. He purposefully made himself homeless for two years so he could understand what poverty was. That is not a life something someone with low social skills, need for routines, sensory issues, need for personal space, need for security does purposefully. The guy was a master of personal psychology, the precise thing which eludes autistics. Even WP agrees: http://www.wrongplanet.net/postt82886.html

Secondly, the claim that cracking the Enigma machine shortened the war by two years is simply false. It may have assisted the Allies landing in 1944 than 1945 or even later. When the Allies landed in Normandy, they were about 650 miles from Berlin, while the Soviets were about 750 miles. The Soviets got there first while the Western allies were still over a 100 miles away. The soviets had been achieving tremendous victories independent of any benefit from cracking the enigma machine and these would have continued even if the Americans and British had never invaded. They would merely have had to have more victories. Six months difference, maybe a year but not two years.

So if this is off topic but both those examples are two topic rather personal to me.

No apologies necessary.

I was taking Michael Fitzgerald's word on George Orwell. I've read just about everything Orwell wrote and I have to say, none of it seems particularly Autistic...

Six months is cool too... :-)

What do you reckon about Beethoven though? I read one Biography and it just screamed Autistic at me.

My thoughts on a few things...

The article was a blog; an opinion piece. From reading related links and articles on the blog, it appears evident that there is a pervasive bias regarding the fear of eugenics. Nothing concrete was offered in terms of what purported testing was done. And while I find the idea of selectively eliminating those on the spectrum (or on any basis) reprehensible and offensive, there is nothing to indicate that these were public organizations with an obligation to accept all donations. Often, women in the US are compensated for their donations (as are men making a sperm donation), making it a business decision as well as one of potential liability. And given that all the causes and influences to being on the spectrum are not understood or identified, it would be akin to taking a risk with the lives of the child as well as his/her parents. While I recognize the fear (and reason behind it) that society will take the same approach with those on the spectrum that has resulted from research into Down's Syndrome, this sort of sensationalistic pseudo-journalism isn't of benefit to anyone either.


M.

[b]The article was a blog; an opinion piece[/b]

Exactly...

[b]sensationalistic pseudo-journalism[/b]

Well it's actually [b]sensationalistic tabloid-journalism[/b], there's really no pseudo about it and it is so, because there's a very large market for news chopped-up and served in bite-sized pieces...

It's second only to LeftBrain/RightBrain in popularity on the Autism Hub and is a reaction against the what has been unkindly called "pseudo-intellectualism" of the Hub bloggers.

It declares its bias thus "Neurodiversity: A militant theology that struggles without pretense of neutrality nor hypocritical equidistance" and here http://the-newrepublic.blogspot.com/200 ... ublic.html and it's written, you will not be surprised, by a former Daily Mail Journalist.

Read the site, not impressed - just my personal opinion. As for your difference between pseudo- and tabloid, we continue to disagree. Nothing in the 'article' gave an explanation or supported the assertion that it was made due to an ASD; it is very vague, other than to mention that the reason given was that her daughter was diagnosed as having AS. The organizations may have rules precluding donation by anyone who has a child with a pre-existing condition... but nothing is examined or pursued in that regard. I'll stand by my description as 'sensationalist pseudo-journalism' and continue to wait for a more even-handed and extensive explanation of what is claimed to have occured instead of relying on the biased rantings of an unknown blogger.


M.

Tried about 6 times last night to post this - the original article:

Unnatural selection?

14 December 2009

By Helen Keeler
Writer and actress

Appeared in BioNews 538

I had wanted to donate my eggs to a woman with fertility problems ever since having children of my own. I frequently tell my three children that I always wanted to be a mother and that every day they make my dreams come true. How wonderful it would be to help make someone else's dreams come true too.

Earlier this year, I approached the four hospitals offering fertility treatment within a 40 mile radius of where I live, explaining my family history. Three of them rejected me immediately. The fourth hospital invited me to attend an appointment with a counsellor, who recommended I be accepted. I was given another appointment to have the necessary extensive blood tests; the results were all fine. At a third appointment, I met a doctor who told me she had a couple in mind to match me with. Shortly after this, I received an email telling me the hospital had now decided they could no longer use my eggs.

There was one reason for all these rejections: my eleven-year-old daughter has Asperger syndrome (AS). She experiences difficulties with communication, social interaction and coordination. In addition, she suffers from panic attacks and her anxiety is at times debilitating. She's also a warm-hearted, thoughtful person and a gifted mathematician; in fact, she achieves above age expectancy in every academic area. Her sense of humour and understanding of language are developing apace; when I told her I'd been rejected as an egg donor, she asked me with a wry smile if that meant she was a bad egg. Only one other relation has an autism diagnosis, a young adult with AS in my extended family who is studying for a degree and holding down a job.

My experience has prompted me to think about this issue in many ways. A starting point is that it's ironic that inclusion and acceptance of people with disabilities has reached the point where there is legislation to protect their rights, while simultaneously doctors are trying to prevent them from being born. Disabled people are, in many cases, capable of great achievements. Should we be using perceived disability to tip the balance against them in fertility treatment? It is human nature to play to our strengths. This is not just something that high-achieving disabled people do, it is something we all do. Recently someone said to me, 'Is there no end to your talents?' I thought, now there's a person who hasn't heard me sing. Like everyone, I have many failings; I choose not to showcase them. Possible disadvantages cannot be weighed against potential talents when contemplating the impact of disability in this abstract way.

While it could be said that prospective recipients of donor eggs would be unlikely to accept them from someone with AS in their family history, I don't think this justifies not offering the choice. This was perhaps the aspect of my experience that caused me the most frustration and sadness. It would be unthinkable for a doctor to tell me that I was not allowed to conceive naturally due to my family history of AS, so why is it acceptable for doctors to make this decision on behalf of those who need assistance conceiving? There is an acute shortage of altruistic egg donors; in rejecting me the message is that it is better to be childless than to have a child with AS. I would disagree most ardently with this premise.

The fact that scientific progress has led to this situation means that an ethical and philosophical debate is necessary. Do we really know what's best? In millions of years of evolution, AS has not been eradicated. While some might say there are greaters numbers of people now with AS than ever before because of improved understanding and diagnosis - a theory that I would not necessarily dispute - it could also be said that we have evolved as a species to have an increasing number of people with AS. In other words, people with AS have been naturally selected, so maybe we need them in our species in a way we are yet to fully comprehend.

The concept of neurodiversity asserts that atypical ways of thinking are simply at a different point on the same scale as the majority of people. This implies that AS is an extreme version of normal. When my daughter struggles, she does so considerably, however when she flies, she soars. I wonder if it is either possible or desirable to breed out these extreme states from our species.

The bottom line is that both human beings and AS are too complex for this to be a straightforward choice between whether it is better for a person to be born who has AS or another person to be born who hasn't.

Put simply, I am against the use of genetic screening for the purpose of abortion. Period. This is a different situation - these are patients, customers who are paying for a service, and the doctors can be held liable. Should the prospective parents be given a choice? Certainly - IF the private medical practice providing the service is willing to offer it and take on the responsibility. Costs? While it isn't back-breaking expense, the cost of preserving samples is not negligible. The costs associated with implantation (and risks) are not insignificant. Lastly, a side note: When one takes up the banner of war, it would be wise to know who the enemy is.


M.

It surprises me that in this supposedly brutally utilitarian world, the often derided General Public seem to place more value on a person's qualities as a human being than their physical attractiveness or intellectual capabilities (cf Susan Doyle).

The enemy to me would seem to be those that promote human worth in terms of conventional beauty and wealth.

Interestingly the NAS has asked the Human Embryology and Fertilisation Authority to look into the situation and has today published this statement:

[b]NAS Response to egg and sperm donation by people with family history of autism
[/b]
The National Autistic Society (NAS) is aware of the experience of Helen Keeler who was turned down as a potential egg donor by four hospital fertility programmes, apparently as a result of having a child with autism.

A lot of parents, and people with autism, feel understandably upset by this decision. They argue that through their selection criteria, fertility clinics are imposing their own form of genetic selection, without any form of consultation with prospective recipients of the donor eggs. The issue opens up a whole area of ethical debate, and it is vital that those with the condition and their carers are directly involved in informing the direction of this important discussion.

Guidance from the Human Fertilisation and Embryology Authority (HFEA) recommends that donor eggs should not be accepted if a recipient or any child born as a result of treatment is “likely to experience serious physical, psychological or medical harm” or that they “cannot get enough further information to conclude there is no significant risk.” Many people affected by autism would challenge the implication that autism is a cause of serious harm to either the child or a parent. It is a lack of understanding and support which causes problems for individuals, not the autism itself.

Autism is a spectrum condition, which means that, while all people with autism share certain difficulties, their condition will affect them in different ways. While some may need a lifetime of specialist support, others are able to live relatively independent lives. Above all every person with autism has the potential – and should have the opportunity – to make a unique and valued contribution to society.

I like the NAS response; even, exploratory, and concedes that being on the spectrum isn't a death sentence. It also re-affirms the reasons why the eggs were rejected, as was discussed in the thread earlier.


M.