I didn't get off to such a good start though.
The taxi was to pick me up at 8.15 am to arrive at the BBC by 8.45. I woke several times in the night, always checking the time on our clock radio. Just after 7am I had to sort out the dog and though I felt wide awake, I went back to bed as I didn't want to sit about worrying for over an hour. The phone rang a while later; I was told my taxi was waiting, and had been outside for 10 minutes. I stupidly told him it was almost an hour early, but no, turns out my clock was an hour late. Yikes!
I managed to get ready quick sharp, aware that given how little time I'd spent on my appearance, I was presenting a face for radio. The taxi man worked some sort of miracle and got me to Broadcasting House on time. I'd a few minutes before we entered the studio and chatted with the lovely Ann Marie, a woman with Asperger's, about the test and the media coverage. She shared my disgust at the comments expressed in the Daily (spit) Mail's disgusting article by the crone Sarler. (I'd link, except it'd make me feel dirty.)
We were shown into the studio. William Crawley was charming and welcomed us while the news was read. Then we listened in as he discussed a story about a soap opera and a crucifix with a vicar and...Minnete (a damaged baby is a damaged family) Marrin, another crone who puts big hate on the disabled young'uns. Oh man I wish she'd been staying for the autism test discussion, I'd have relished the chance to question her!
Below is the show podcast. The autism bit starts after 6 minutes. The BBC ram file link is here.
The segment began with a few "voices from the street," almost all in favour of screening. Then Professor Fitzgerald was introduced. I knew him as the man who specialises in diagnosing the dead. He's written several books linking autism with important and clever historical figures. He defined the condition as a variety of problems, with some people like Frank Pantridge, Joyce and Beckett having a very high IQ while others (1 in 200 he says) exhibit savant skills. He said that if pregnancies with high testosterone were terminated, since you wouldn't know what level of autism it was you'd put humanity at risk as people with autism and Asperger's are going to save us when the sun burns out. He claimed that autism is quite different from Down Syndrome, which isn't associated with genius. He then repeated his theory.
(My thoughts- are the only people who matter geniuses? Also, Simon Baron-Cohen's measurement of testosterone was never intended to be used as a prenatal screening tool.)
A spokesperson from a charity called Antenatal Results and Choices said that they see people make difficult and different decisions after prenatal diagnosis and didn't reckon people would end pregnancies on the possibility that their baby had autism. She didn't think there'd be a national screening but that people who already have severely autistic children who'd say they couldn't cope with another one might want the test. Since not everyone would be tested, autism wouldn't be eliminated because after all, we still have people with Down Syndrome.
(That's nice to know...snark.)
Anne Marie spoke next, giving a definition of Asperger's that matched the learned professor's; these people are on the high end of the spectrum, there's a lack of eye contact, a lack of empathy, etc, but usually with a high IQ and sensory issues. She told how she came to be diagnosed after her daughter, and how it explained some difficulties she's experienced growing up.
Her daughter's diagnosis helped her get educational support and to improve her socialisation difficulties.
(Does she really believe that about empathy?)
Then it was my turn. I was asked that, though I love my son and wouldn't wish for a world without him, what would I say to those mothers who have autism in their family line who would choose to have screening and abort affected fetuses. I thought he said "mothers who have a child with autism in their family."
I answered, after a pause as my mind went blank, that I didn't think it was fair that a child should pass a subjective test to be born, that autistic lives should be as valuable as other lives and that no one can predict the outcome for a child based on a diagnosis just like you can't predict it for other children.
William asked if I thought the issue was quality control, that some people are acceptable while others are not. I agreed and explained that testing for a condition implies that those people are less valuable than those without it.
Then it was the good professor's turn again. He was asked why he made a case for protecting geniuses, but why not protect children with Down Syndrome?
Prof. Fitzgerald agreed but insisted that he was speaking about the survival of the planet. Individual mothers should have the test and make up their own minds.
(That seems to go against the idea of protecting the vulnerable post diagnosis.)
He reckoned it's a question of individual rights versus survival of the species and claimed that genius and learning disability are often found in the same families.
Anne Marie said that society doesn't know enough about autism and Asperger's to make decisions on this. She then said that Asperger's and autistic people like Bill Gates have a lot to offer and should be cherished.
The ARC spokesperson was asked about the risks of the test itself.
(Hold on a minute, what test are you lot discussing here? Do you know something I don't because there is no test yet!)
She answered however by detailing the risks of the amniocentesis test. Baron-Cohen's cohort had the testosterone in amnionic fluid measured that way.
(I think there's a mix up in that people are assuming that this is going to provide the basis for the strictly hypothetical test!)
Prof. Fitzgerald wittered on yet again about the autistic Champions of the Universe, but said it was each woman's individual choice. He then told how 1% of people are autistic. Anne Marie mentioned that many people are not yet diagnosed.
I came in to say that I thought the role of society is very important as it's hard to make a choice while autistic people and families are not supported and I got my little NAS quote in about focusing research on improving the well being of and opportunities for autistic people rather than focusing on cure and prevention.
Eventually Prof. Fitzgerald mentioned that autism is complex and Baron-Cohen's work looked at autistic traits which doesn't correlate to autism. He talked about risk factors in families with an autistic child already.
My final point was that it's difficult to discuss this while the media presentation of autism is so negative and doesn't tell of families which are managing fine and thriving even with children with severe autism "like my son who's just an adorable, quirky, amazing child."
Anne Marie finished by saying that the world could miss out on a lot, there needs to be more acceptance and this goes back to Hitler and the Nazis and the professionals and aspies she knows fear the world would be like Stepford Wives.
I left feeling like I should have said more, but that I'd made a decent effort in my first time speaking on the radio. I'd been nervous, you can hear it in my voice. But it had been a decent discussion. I hope I was able to repesent my view that ALL autistic people have worth.