Genetic Screening for Aspergers

[Christopher McCandless]

Read this:

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.

The NAS make a rather succent response here: http://www.nas.org.uk/nas/jsp/polopoly.jsp?d=2074

In short - anyone thinking of donating sperm / eggs, your time is limited. I encourage you all to take the earliest opportunity.

[Parts]

Guess everyone will have to do it the old fashioned way

[Christopher McCandless]

Guess everyone will have to do it the old fashioned way

Its inefficient though - the cuckoo knows best.

[Adam]

the last thing we want is more little aspies in the world

why create more suffering?

if someone wants a kid and can't get it in them or get it in their woman the normal way, go and adopt one

 

[Parts]

I want more in the world they are easier to get along with

['andersom']

Guess everyone will have to do it the old fashioned way

Its inefficient though - the cuckoo knows best.

Inefficient?

In what way? Apart from people having trouble conceiving that is.

Or are you thinking about sperming the world?

[Christopher McCandless]

Guess everyone will have to do it the old fashioned way

Its inefficient though - the cuckoo knows best.

Inefficient?

In what way? Apart from people having trouble conceiving that is.

Or are you thinking about sperming the world?

If say 100 or so Aspie males were to walk into UK sperm banks and each make a donation, not only does it take them just an afternoon, but when they get caught, the media coverage could be quite explosive.

[Adam]

If a dozen or so aspies walked into a bank tomorrow and started an armed siege, not only does it just take an afternoon, but when they get caught, the media coverage could be quite explosive.

['andersom']

Guess everyone will have to do it the old fashioned way

Its inefficient though - the cuckoo knows best.

Inefficient?

In what way? Apart from people having trouble conceiving that is.

Or are you thinking about sperming the world?

If say 100 or so Aspie males were to walk into UK sperm banks and each make a donation, not only does it take them just an afternoon, but when they get caught, the media coverage could be quite explosive.

What if they don't get caught. And, very hypothetically, those hundred men have very effective sperm, resulting in a thousand ASD babies. Babies for big part born in families without any idea of ASD. With no quirky relatives. Major part of a thousand babies born in an environment that will mean utter seclusion for them. Is that worth it? And then, on top of that, their social parents, and the kids themselves, realising after a few years, that they exist because of some action, started on some ASD forum, to get more ASD awareness.

Sorry, you're dealing with people here. Parents who will be at a loss about their child. Children estranged from their parents with who they share nothing of their quirkyness. Cruel plan of action. Very cruel.

And what if they do get caught. Hell talk about stigmatising people with ASD. From then on, people will connect Aspergers with this group of a hundred men, trying to sneak their sperm into a sperm bank. And it will not go down well. It will only harm the cause you say you stand for.

[Christopher McCandless]

If a dozen or so aspies walked into a bank tomorrow and started an armed siege, not only does it just take an afternoon, but when they get caught, the media coverage could be quite explosive.

It has the drawback of the coverage being useless, 1000 less aspies don't get born and we dont get a dozen or so aspies locked up for a few years, going more loony and coming out deluded about their testicular fortitude and how they are making the world a better place.

My method is better, don't you think?

[Christopher McCandless]

Guess everyone will have to do it the old fashioned way

Its inefficient though - the cuckoo knows best.

Inefficient?

In what way? Apart from people having trouble conceiving that is.

Or are you thinking about sperming the world?

If say 100 or so Aspie males were to walk into UK sperm banks and each make a donation, not only does it take them just an afternoon, but when they get caught, the media coverage could be quite explosive.

What if they don't get caught. And, very hypothetically, those hundred men have very effective sperm, resulting in a thousand ASD babies. Babies for big part born in families without any idea of ASD. With no quirky relatives. Major part of a thousand babies born in an environment that will mean utter seclusion for them. Is that worth it? And then, on top of that, their social parents, and the kids themselves, realising after a few years, that they exist because of some action, started on some ASD forum, to get more ASD awareness.

The thing is, its only really the middle classes who will have these children. In the long run, a good chunk of them will realise their potential, making things better for the rest of us. By the way, most of them won't get caught before donating, its later on 2-3 years down the line.

Sorry, your dealing with people here. Parents who will be at a loss about their child. Children estranged from their parents with who they share nothing of their quirkyness. Cruel plan of action. Very cruel.

A few thousand people wanting society to adapt to their situation - absolutely brilliant. The same obsessively normal people having to confront and fight this reality. Even more fantastic.

And what if they do get caught. Hell talk about stigmatising people with ASD. From then on, people will connect Aspergers with this group of a hundred men, trying to sneak their sperm into a sperm bank. And it will not go down well. It will only harm the cause you say you stand for.

It starts a fantastic debate, which is very winnable in our favour. All we have to do is make it about our humanity. In fact, its one that would be nearly impossible to lose. From what I gather, some influential people in the NAS (having spoken to them face to face) thought it was a fantastic idea when I mentioned it to them in passing.

['andersom']

I disagree strongly. No need to reiterate my objections I think. You only look at effect on awareness, be it positive or negative. I do want to look at the humans involved. Not only the parents and babies. Also people on the spectrum.

I would be more ashamed to come out after a massive action like that.

[Phlexor]

Guess everyone will have to do it the old fashioned way

Its inefficient though - the cuckoo knows best.

Seems to work for me 

[renaeden]

More aspies know each other now, due to the internet. So there should be an increase in aspies being made as a result of relationships started online.

[Christopher McCandless]

I disagree strongly. No need to reiterate my objections I think. You only look at effect on awareness, be it positive or negative. I do want to look at the humans involved. Not only the parents and babies. Also people on the spectrum.

I would be more ashamed to come out after a massive action like that.

The funny thing is that this approach has already been road tested and none of your objections emerged. You do realise the consequences of winning the debate would mean at least adequate support for everyone with AS and reasonable access to opportunities.

And yes, even if those 1000 children lived awful lives, another few hundred thousand or so in this country wont be. I am of course saying that most of those 1000 people will have happy lives, like most people who are born.