By Helen Keeler (author and actress)
This article forms part of a School Resource Pack created by the Progress Educational Trust (PET) as part of its project Spectrum of Opinion: Genes. The article incorporates links to an accompanying Glossary of terms, and is followed by a list of 10 key words, phrases and names and a set of Questions to consider. A more extensive version of the article can be found on PET's BioNews website.
I have 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.
In 2009, I approached the four hospitals offering fertility treatment within a 40-mile radius of where I live, offering to become an egg donor and explaining my family history. Three of them rejected me immediately. The fourth hospital invited me to attend an appointment with a counsellor, who recommended that I be accepted. I was given another appointment to have the necessary blood tests, and the results were all fine. At a third appointment, I met a doctor who told me she had a couple in mind whom I might donate my eggs to. Shortly after this, I received an email telling me that the hospital had now decided it could no longer use my eggs.
There was one reason for all of these rejections: my 11-year-old daughter has Asperger's syndrome. She experiences difficulties with communication, socialinteraction and coordination. In addition, she suffers from panic attacks and terrible anxiety. She's also a warm-hearted, thoughtful person and a gifted mathematician, who does well in all of her studies. Her sense of humour and understanding of language are developing quickly - when I told her I had been rejected as an egg donor, she asked me with a wry smile if that meant she was a bad egg. I have only one other relative with an autismdiagnosis, a young adult with Asperger's syndrome in my extended family who is studying for a degree and holding down a job.
It seems strange to me 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.
It could be argued that people who want to receive donor eggs wouldn't be likely to accept them from someone who has Asperger's syndrome in their family. Even if this is true, I still think people who want to receive donor eggs should be offered the choice. It would be unthinkable for a doctor to tell me that I was not allowed to conceive naturally due to my family history of Asperger's syndrome, so why is it acceptable for doctors to make this decision on behalf of those who need help conceiving? There is currently a shortage of egg donors in the UK. Rejecting me as a donor sends a message is that it is better to be childless than to have a child with Asperger's syndrome.
In millions of years of evolution, Asperger's syndrome has not been eradicated. While some might argue that more people now have Asperger's syndrome because of improved understanding and diagnosis, it could also be argued that we have evolved as a species to have an increasing number of people with Asperger's syndrome.
The idea of neurodiversity suggests that unusual ways of thinking are simply at a different point on the same scale that the majority of people exist on. This implies that Asperger's syndrome is an extreme version of normal. When my daughter struggles, she struggles considerably. But when she flies, she soars.
The bottom line is that both human beings and Asperger's syndrome are complex - too complex for there to be a straightforward choice between someone being born who has Asperger's syndrome, and someone being born who hasn't.
10 key words and phrases
Autism and Asperger's syndrome are partially hereditary conditions. Should people who have, or whose relatives have, hereditary conditions be allowed to donate eggs or sperm?
Assume you are a fertility patient looking to receive donated eggs or sperm. Do you think it is important to know whether your egg or sperm donor, or any of their relatives, have a hereditary condition? Why?
Is there a difference between the risk of inheriting a hereditary condition, and the risk from inheriting a hereditary condition? If so, what?