Sunday, 20 December 2009

Will Autism Speaks speak out?

I wish to draw attention to this article from Bionews from which I quote:

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.

The National Autistic Society of the UK has responded thus:

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 would like to know how Autism Speaks in the US and the UK are going to respond.

I would also like to see a response from Autism in Mind and Research Autism.

This is your forum, go ahead: ........

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