19 Jan 2009

Autism discussion on the radio

Staring me!

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.

18 comments:

Socrates said...

Well done...

Woww! In a discussion with Prof. Fitzgerald...

The first of many, perhaps?

mike stanton said...

Excellent!

in my opinion you were better than the professor. You made all the key arguments and did not let them pigeon hole you as just a mum. Well done!

Jason said...

There were some really good points brought up. I really liked it.

Jason

kristina said...

Fabulous several times over!

You sounded like a voice of compassion and reason.

Sharon said...

Don't make my head swell!
I'm glad I was able to do it and appreciate so much that you liked it.
I am grateful to all the people who gave advice, it helped a lot.

Grannymar said...

Sharon you did well. The voice of calm compassion. Well done!

laurentius rex said...

Professor Fitzgerald wittered on ...

That is my impression of him, you didn't cast aspergians his way at the possibility of a self dx did you?

I heard something else on the radio, earlier on, some vicar (the most fertile breeding ground for English eccentrics is the CofE) going on about not wanting a cure for his severely autistic child.

Yeah it is not all bad news out there.

Sharon said...

Grannymar, you're very kind.

Mmm Larry, I never even thought that! But perhaps he thinks of himself as a genius (he might be, I don't know his work at all).

It's good to know that sometimes there's a bit of good news too.

Alyric said...

Well done Sharon. I enjoyed every minute of your rationality in the face of great provocation:)

Nick McGivney said...

I thought it was an excellent start to a career in public radio. Cut-through would have been well nigh impossible there. I sensed you and AM almost wading against treacle. A most auspicious start, if not an overly punctual one!

But tell me that Minette Marin was NOT in that studio before you. Or that it was only an ISDN link from that London. Ew! God I would've garotted the insane cow.
(Oops, did I say that?)

:) well done you

lisadom said...

Without listening to it I am going to throw in a DX for the good Prof too! Having met him, had the paper diagnosis done for Boo and Bratty by him and then sat on a board of management with him for 2 years; I heartily endorse his Aspergers. I hope he takes that as a compliment rather than slander.
I also want to quote you Sharon on " quote in about focusing research on improving the well being off and opportunities for autistic people rather than focusing on cure and prevention" That is exactly how I feel. If there wasnt such fear and desolation about the level of services still not being provided, people would not be hooking into these so-called cures and research into prevention. Governments cannot "eradicate" autism; they must face and manage it. The evidence based and very long term cost effective means are there (getting the right intervention early enough with on-going life and vocational support will equal less family breakdown and institutionalisation and create more active tax paying citizens = it's all good!)
My other point would be that these "people on the street" need to spend some time reading fertility blogs. Why oh why do we even discuss terminating a healthy fetus by choice? A fetus that anyone with fertility challenges would simply love to be able to carry!!!!!!

For the record I support the early termination of a fertilised egg if the owner of that egg does not want to have a Baby. full stop.
I do not support what is becoming a discussion of eugenics.

Nick: I think the wagon Minette will be looking over her shoulder for the rest of her life to see if any of us are about to kick her arse for the comments she has made. I dispair of the waning compassion of a society that whines about rescuing Donkeys from Spain, or adopting ex-racehorses and greyhounds; but cannot find basic compassion for people who represent diversity in all it's forms. And whether they be the next de Valera, or Bill Gates, or just my Bratty girl with all her severely autistic ADD charm - they all have value.
Kids: Not just for christmas!
xx well done Sharon!!
Gonna try and make that file work now.

Hammie said...

(just listened to it) You all did great, very articulate Sharon and I would love to meet Anne-marie in person too one day.
Nick, thank god that science has improved the health outcomes for Downies, and therefore the quality of life for their parents. Their personality, love and abilty to improve the rest of the world was always there. That is how science should work. Then we all get to enrich each others lives.
This is not a lifeboat on a sinking ship, there is room and rations for all of us (if we share) we do not have to choose who is valuable enough to live and who has to start treading water.

(of course sharks have a right to eat too, so maybe there is the odd journalist who might be persuaded to take a dip??)

xx

Casdok said...

Well done!
An interesting discussion.

konnie said...
This comment has been removed by a blog administrator.
Sharon said...

I've removed the advertising link from the previous comment and am reposting it here.

Konnie said: "Autism, Dyslexia, Attention Deficit Disorder are all potential pitfalls when a child doesn't have proper child development. I think all families should be wary of this."

Sharon said...

@Alyric, thanks. I tried to be less...intense than usual.

@Nick, oh I'm so rubbish, a proper media player would have checked the alarm clock!

And no, dearest "little-landmine" was speaking from England. Pity.

@Lisa/Hammie (oh no, have I outed your secret identity?)
Thanks for all of that mega comment. I fully endorse your statement, "whether they be the next de Valera, or Bill Gates, or just my Bratty girl with all her severely autistic ADD charm - they all have value." True.

@Casdok, thank you.

Club 166 said...

Excellent job, Sharon.

You did the best job of providing information and steering the conversation back towards the points you wanted to make. You came off like a pro.

Joe

Sharon said...

Thanks Joe. If I thought I'd hear nice words like this every time, I'd be trying to get on the radio every week!