Island Life: A Special Public Address Message
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Hi
This just came over the wire and caught my attention because of the Russell's child
CombiMatrix Molecular Diagnostics to Develop Autism Dx With TCAG Markers
It's a biotech news item referring to the development of a genetic diagnostic test for Autism.
Which caught my eye because I hadn't realised they had chased down any genes linked to autism so I followed the path to CTAG The Centre for Applied Genetics which has apparantly done a large study and found a portion of the genome linked to autism and within that a specific gene.Of course none of this implies a "cure" whatever that might entail, but certainly diagnosis is very important in terms of identifying children who are going to need a different kind of education.
cheers
Bart -
Of course none of this implies a "cure" whatever that might entail, but certainly diagnosis is very important in terms of identifying children who are going to need a different kind of education.
Yep, the CTAG study actually looks like a pretty major step - made possible because a lot of disparate studies finally shared data.
Hopefully we're seeing the beginning of the end of the mercury-in-vaccines canard and the various "cures" embraced by vulnerable parents. I had to explain to a mum of an aspie child this morning that as far as I could see, the mercury theory had no basis in fact. That's quite a hard thing to tell someone's who's been chelating their child for the past two years and thinking they've been doing something good.
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He also uses 'Gary's Mod', which opens up the Half Life 2 engine (ironically, all the interesting stuff is in the shooters) and lets the user create stuff.
lies! neverwinter nights (1&2 - RPG), total annihilation, and as of last week supreme commander (the not-sequel to TA - both RTS) are thoroughly mod friendly and interesting to tinker with.
TA/SC especially, as apart from 3d modelling and physics stuff, you can get right down to the nitty gritty AI creation.
FPS schmeff-pee-ess.
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Just another version of the genetic linkage story in the Toronto Star and I thought I better correct the mutation in my previous post - it's TCAG not CTAG.
Hopefully we're seeing the beginning of the end of the mercury-in-vaccines canard and the various "cures" embraced by vulnerable parents.
ugh sadly I doubt it. There will always be those who tout "alternatives" to science and medicine. Sometimes well meaning sometimes not. I used to believe that solid science and fact would win people over but that isn't true.
However, we do seem to be begining to provide some really solid science for those who want it.
The really difficult thing with autism (from an outsiders perspective) is that some of the characteristics seem to be useful in that they aid in focussing of attention on a single task, in some cases aiding learning in some fields. It's almost as if there is a balance in the biology of the brain between social skills and the kind of focussed logic needed by programmers and mathmaticians and artists. So if you could eliminate (mild) autism from the genepool would you being doing good or harm? So much to learn:).
made possible because a lot of disparate studies finally shared data.
It does happen a lot in science, yes we have huge egos to massage but ultimately most of us want to do "good" and collaborating usually the best way. What makes it more difficult sometimes are the issues surrounding IP and the desire of parent institutions to avoid sharing IP.
cheers
Bart -
world of warcraft has more addons and macros that you can shake a stick at, most of which seem to scale upwards in complexity depending on the skill of the user.
there's also the humungous online community.
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I presume the Rapture must be imminent- both Murray at & Whaleoil are in behind the Hustle for Russel.
http://hittingmetalwithahammer.wordpress.com/2007/03/08/cant-blog-migraine/
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merc,
The Southpark WOWcraft episode was definitive. Hard gamers here at work call the outside world RL.
RL = real life. -
IMHO we don't need a cure - we need better communication interfaces. In the right environment i thrived and i can be 'me' in cyberspace.
I think we really need to get the 'dis' out of the language we use for people living on the autistic spectrum and get people to see our abilities and gifts. After all we now live in a knowledge economy, where people like me are at a huge advantage.
It's really good to see all the understanding and support here at PA, and I think New Zealand really is a great country for AS kids. Who could go on to be great themselves with the right nurturing.
Hi Russell. Glad Leo has been diagnosed early, so you can focus on his identifying his strengths and helping him balance out his weaknesses. He might enjoy using the http://www.kidsprogramminglanguage.com/
I will drop you a line and continue this conversation privately. I'm only recently outed myself as AS so am taking things gently. Good luck with the fundraising!
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So if you could eliminate (mild) autism from the genepool would you being doing good or harm? So much to learn:).
It's become a bit of a cliche to say it, but there is some evidence that both Newton and Einstein were on the spectrum, which accounts for a fair bit of human progress. Einstein didn't talk till he was six, was considered a moron by his early teachers and often spoke about the visual nature of his thinking.
I guess this is the unnerving side of the genetic knowledge that's accumulating. It can be incredibly stressful to be the parent of an aspie child. But the availability of prenatal screening opens a terrifying can of worms.
I've taken to saying my kids are Aspergers, rather than that they have Aspergers. That's who they are and I'm not going to waste precious time looking for a "cure".
Like Ms. B says (hi!), better communication interfaces. Aspies are a minority and they'll have to live in a neurotypical world, and need upskilling for that. But the problem isn't them, it's their interaction with an environment not designed for them.
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MsB: question. Why are so many good autie/aspie bloggers (including yourself) female? It's almost like the blogging gender balance is reversed in neurodiversity land:
http://autismdiva.blogspot.com/index.html
http://ballastexistenz.autistics.org/?p=65
http://partprocessing.blogspot.com/
http://autisticbfh.blogspot.com/The "bfh" in the last one stands for "bitch from hell". Heh.
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Hi Russ and MsB
Yeah that was I guess the thinking by asking the question in the way I did. Cliche or not it is true that some of the most valuable members of the human race have been anything but "normal". Recognising that, accepting that and taking advantage of that is really important for society.
My gut feeling is that curing all autistim either genetically or with some form of drug (which given you are talking about interactions between nuerons will be difficult) is likely to be a bad thing.
Note I don't think anyone is suggesting the extreme of the spectrum should be ignored if they could be treated in some way I suspect that could only do good.
But for those folks who we are now recognising have a biological difference that means they percieve and interact with the world differently, the issue has to be not how you you make them "normal" (yuk) but rather how do you identify what they need to make the best of their abilities. Diagnostic assays are a key and I think that's where knowledge like the recent stuff coming out is so promising.
But as soon as you have that knowledge you create the opportunity for prenatal screening and elimination of those genes and therefore those different people from society. I think that idea worries a lot of people including me.
If we understood all the interactions that made up the autistic spectrum (and some day we will) where would you draw the line and say this child will just be different and that child will be genuinely handicapped?
It's the kind of question that is coming with many many genetic variants. It's a question many folks shy away from but realistically if our generation doesn't start discussing these issues and figuring out an acceptable path through these decisions then I think we are likely to see some pretty bad things happening.
cheers
Bart -
It's lovely to read this. Like Conor, but unknown probably to Russell, I've been listening to and reading Russell Brown since BFM days - followed into Hard News and now Public Address. Thank you Pead PR for picking this up - I also know Deborah Peak - I work in PR in Queenstown where one year Deborah came to town and hauled a huge event from the brink of disaster back to its rightful position. Russell, you've got good friends. I can't make the gig - I live in Queenstown - but will watch with interest and will donate to the account.
cheers
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I'm sure you already know about this one Russell but other people might be interested.
Daniel Tammet is a high-functioning autistic savant. He is the author of "Born on A Blue Day" a very inspiring book about his life and achievements. He has become a bit of a celebrity, particularly after he set a European record by reciting Pi from memory to 22,514 decimal places in a time of 5 hours. He has a web-site and blog at http://www.optimnem.co.uk/
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Daniel Tammet is a high-functioning autistic savant. He is the author of "Born on A Blue Day" a very inspiring book about his life and achievements.
Daniel Tammet is an amazing person and that book is just beautiful. It's sort of a shame that broadcast interviewers in particular always make him do savant circus tricks, because that's not really what the book's about.
OTOH, the Las Vegas casino sequence in Brainman (aka The Boy with the Incredible Brain), the documentary that first brought him to public attention, is really mind-blowing. There's a YouTube clip of it here:
And the clip of him meeting Kim Peek, the real-life inspiration for the Rainman movie is there too:
If anyone's interested in grabbing the whole thing, there's an active torrent for Brainman here.
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This is a great thread - I have learnt so much! Good luck with the Hustle, I can't come but will contact Conor about making a contribution too. It's for a truly good cause. Best wishes to you and your family RB.
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...the unnerving side of the genetic knowledge that's accumulating
There's quite a lot happening already in the field of genetic counseling on a whole range of genetic variations. There's a Genetic Service run by ADHB. I'm not sure in what instances they might advise a termination of pregnancy, say, but certainly the ethics involved with these sorts of issues and how to communicate this sort of information to parents is a growing field. I think that's a reassurance.
What strikes me as possibly a bit troubling is now we know some of the details of the genetic basis for our social skills then that opens up the door for tampering with that for political purposes. But it's fascinating that we are now able to see how evolution has encoded complex behavioral skills.
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What strikes me as possibly a bit troubling is now we know some of the details of the genetic basis for our social skills then that opens up the door for tampering with that for political purposes. But it's fascinating that we are now able to see how evolution has encoded complex behavioral skills.
The metaphor I like to use is the one of a computer graphics card. Sure you can try and run that fancy 3D game - ie: life - on the CPU only, but it'll be slower and sometimes it'll crash.
The challenge of trying to process all that interaction on an intellectual, rather than a "hardware" level is considerable.
I met a guy (from Auckland Uni) who's on the spectrum yesterday. He came up to introduce himself at a seminar I spoke at, and sort barged into the conversation I was having. Which was just fine, but it makes you realise how complex apparently trivial things like joining a conversation actually are.
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merc,
Which was just fine, but it makes you realise how complex apparently trivial things like joining a conversation actually are.
This is a remarkable and beautiful comment.
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I met a guy (from Auckland Uni) who's on the spectrum yesterday. He came up to introduce himself at a seminar I spoke at, and sort of barged into the conversation I was having.
As a "sometimes" presenter in the IT industry, I have observed and had this happen to me a few times at after-match Q/A chat sessions. Of course having had no previous awareness of aspie/autie folk I just assumed it was (stereo)typical IT-geek behaviour. Perhaps there is truth in the hypothesis that the IT industry does attract people on the aut/asp spectrum.
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Good luck with your fundraiser, Russell. I admire you tremendously for doing what it takes to make your kid happy and fulfilled.
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In Todays The Scientist (subscription required) is a link to a paper in the magazine Science looking at the link between copy number variations (CNV) and sporadic autism. Essentially the authors looked for changes in the chromosomes at a larger level. Looking for deletions or duplications of chuncks of the DNA.
Sebat and his colleagues analyzed the DNA from 264 families using either blood, immortalized B-cells, or both. They used ROMA, a type of microarray that relies on comparative genomic hybridization, to compare the children's genomes to the parents'. Each potential copy number variation, or CNV, was re-tested with a fresh blood sample from the same person for confirmation.
The study found that 10% of children (12 out of 118) with sporadic autism had de novo copy number variations, whereas only 1% of controls (2 out of 196), who had no history of autism, showed CNVs. Among families with multiple autistic children, only 2% (2 out of 77) autistic children showed differences in copy number from their parents.
The frequency of de novo mutations in children with sporadic autism "is high," said Charles Lee of Brigham and Women's Hospital at Harvard Medical School, who did not participate in the research. Lee has surveyed CNVs in the general population and found rates of de novo mutation in the general population on the order of 0.2%.
Most of the mutations seen in the autistic children overall were deletions, whereas the two CNV cases in the control group were gene duplications. The finding isn't necessarily surprising, said Sebat, who said that human bodies are "less tolerant" of deletions. "When you're down to only your back-up copy for a gene, you're at greater risk for whatever minor defects may exist in that that gene."
The method they used means they can't get to the genes of interest very easily but more interesting is the frequency which is perhapss higher than one might expect. Probably indicating that many genes are involved in the brain development important in developing the social skills that are affected in the autistic spectrum.
sorry bit biology jargon rich
cheers
Bart
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