Aspies For Freedom

We took AFF leaflets to the Conference, which we were allowed to place at the entrance for people to take.
We were able to talk to people at Autism Cymru, whom I had previously e-mailed about NAAR UK, asking about the support they were giving NAAR.
Firstly, he said that he had seen the AFF leaflet and supported and agreed with all of our aims, which was very good to hear. He said that he opposed ABA, and we talked about the JRC. On this issue of NAAR he said the he had asked NAAR UK to contact us to discuss their intentions, but I said that they had not done that.
NAAR UK have given the impression to Autism Cymru that they are raising money for research into causes and treatments, and not for a cure. As we can see from NAAR in the US they certainly are looking for a cure. I hope to correspond with NAAR UK and get a specific answer from them.

We talked to Professor Pat Howlin too.
I asked her how she felt about the search for a cure for autism. She felt that it would not happen, and was very unrealistic. She felt that the "core of autism, without the intellectual disabilites" is not negative in itself. She said that the name Cure Autism Now was negative in terminology.

I asked her about MB12 treatments. She had never heard of them, so I explained the basics of it. She said that she was very sceptical, as in the past some medical treatments appear to help in the short term, such as premature babies being given pure oxygen, but there are long term problems that are later seen in the children.

I asked her for her views on mercury as a cause, and she agreed that it was a red herring as a cause for autism. As for MMR vaccines, she said that parents should realise that not vaccinating could cause many more problems for children, as measles can cause brain damage.
I told her how AFF was often criticised for being against the mercury and MMR vaccines, and she said "well I think you are right".

We told her about AFF and she was very interested, and we told her of the chat network. She said that she could tell patients as it was good to have something positive to point them to.

I told her about the pressure on parents on the spectrum from some areas, ie, pressure to abort, or threat of having children taken, and how a prenatal test for autism would increase that greatly, and that unlike down's syndrome where it occured from NT parents, that many autistic kids come from autistic parents, so that we could face being wiped out genetically.
I also told her that CAN was funding the Autism Research Centre where tests had been done on amniotic fluid of women with autism, and how higher testosterone levels had already been found as a factor in unborn babies that later were dx with autism.
She felt that it was not possible to wipe us out entirely as there are people with traits alone who have kids with AS. Gareth exlained how it could have a dramatic effect nevertheless, and Pat mentioned if Einstein had never been born, and the positives that would be lost.

We were really pleased to have the opportunity to discuss these important matters.

Thanks for the info, Amy, it sounds like an interesting conference!

It's certainly good to see some professional awareness of that fact.

I wonder how the percentages compare to the general population?  Some NTs also go into a slow intellectual decline as they age.  I would think that would be less likely for aspies because we spend more time throughout our lives learning about new interests.

I didn't see this earlier, Amy, because we were posting at the same time.

That may be true, but it's like saying the Holocaust wasn't so bad because a few Jews were able to survive.   :roll:

Exactly.

My point was that if the autistic population does not stay level or increase, the only other option is for it to decrease from one generation to the next. This could very easily happen if a pre-natal test was found - the majority of autistic foetuses would most likely be aborted, leading to a gradual "thinning" of the population. We have already seen this with downs syndrome.

Not quite what you want jerry but I thought this would be helpful for you


http://www.altonweb.com/cs/downsyndrome/...raise.html

Jerry, your heart is in the right place.  I apologize for giving you a hard time in the past about petty stuff.

As for the anger: Use it productively and channel it to give you energy for your writing.  We all need to write articles and build websites and make people aware of what is going on, before it's too late.

When I was a child, I sometimes wondered if I would have been brave enough to hide Jews from the Nazis, or to help slaves to escape on the Underground Railroad.  Many brave people risked their lives in the past, and some died, for what they knew was right.  In the age of the Internet, there's no need to take such risks; we just have to put our butts in our desk chairs and our words in cyberspace.  That kind of puts things in perspective...

           I have put off writing it until I have enough time to maintain a clear head about it. Every time I start to write it, I feel so much anger about what I fear will happen to us that I can't continue.

                                 Jerry[/quote]

I'm sorry to hear that you are having a hard time with your emotions, anger is a nasty thing that can eat you up if you let it.
I hope you can write soon because I would be interested in reading this, I was speaking with a parent the other day whos Son is on the spectrum and she and her husband were going to have some blood tests done by a genetics person. Who seems to think she can tell them if they are likely to have another child on the spectrum.

ugh  In the spectrum, there is a wide variety of outcomes. so this is silly. of course the only thing they can test for is fragileX currently.

hmm

I pulled a jerry!! LOL

that was me!!!

I just posted a short article about genetic testing:

Autism Research and Prenatal Testing

Paula, please feel free to pass on the link to your friend, if you wish.

To everyone else: We need a lot more people writing about this issue.  Build more websites and get busy.  Silence is death.

"To everyone else: We need a lot more people writing about this issue. Build more websites and get busy. Silence is death."

I totally agree, I just made a point in the genetics forum that we are really getting somewhere by spreading our views on this.

Neurodiversity.com has a page of eugenics links:

Eugenics & Cognitive Difference

This could provide helpful references for writing about eugenics.

Thanks for the kind comments Paula.   :smile:

It sounds to me as if your friend is being duped.  As Joe pointed out, there are no accurate tests at present.

Having read Amy's account of her & Gareth's experiences at the conference in Wales, it strikes me more generally that there is a major difference in the tenor of the debate here in Britain and in the US -  whereas in the US the 'cure autism' lobby seems all-powerful and the very extreme language e.g autism = cancer, is common, here in the UK the debate is more nuanced with many professionals and even parents open to the idea that, yes autistic people do often suffer serious difficulties, but there *is* a positive side also! I was at an NAS meeting in Derry earlier this year and when I put an anti-cure perspective forward, the audience there (all made up of mothers of autistic kids) all responded positively! One even said she was very glad I had said that because she had heard so much gloom & doom rhetoric about autism and she really wanted there to be a positive side to it.

This difference in the debate here, I think, means that our message  has a much better chance of being heard and having an influence in the short-term here in Britain at present than in the US.

Views?